Children Who Are Deaf-Blind

November 2007
Number 2 Practice Perspectives - Highlighting Information on Deaf-Blindness
National Consortium On Deaf-Blindness
ReportedVisionand
HearingLossinChildren
IdentifiedasDeafBlind
VisionLoss
17%totallyblindorlight
perceptiononly
24%legallyblind
21%lowvision
17%corticalvision
impairment
21%other
HearingLoss
39%severetoprofound
hearingloss
13%moderatehearingloss
14%mildhearingloss
6%centralauditory
processingdisorder
28%other
AdditionalDisabilitiesin
ChildrenWhoAre
DeafBlind
66%cognitivedisability
57%physicaldisability
38%complexhealthcare
needs
9%behaviorchallenges
30%other
DatafromKilloran,J.(2007).Thenational
deafblindchildcount:19982005inre
view.Monmouth,OR:NTAC.
T
henatureandextentofdeafblindnessinchildrenisoftenmisun
derstood,butanewreport,TheNationalDeafBlindChildCount:
19982005inReview,shinesalightonthisuniquegroupofchildren.
Thereview,whichsummarizes8yearsofdata,notonlyprovidesa
countofthenumberofchildren,frombirththroughage21,whohave
beenidentifiedasdeafblindineachstate,butalsoreportsotherde
tailsaboutthispopulation.Theseincludetheclassificationofvision
andhearingloss,thetypesofadditionaldisabilitiesthatmaybepre
sent,andthecausesofdeafblindness.
Althoughthetermdeafblindimpliesacompleteabsenceofhearing
andsight,inreality,itreferstochildrenwithvaryingdegreesofvision
andhearinglosses.Thetypeandseveritydifferfromchildtochild.
Thekeyfeatureofdeafblindnessisthatthecombinationoflosses
limitsaccesstoauditoryandvisualinformation.
Childrenwithdeafblindnessrequireteachingmethodsthatarediffer
entfromthoseforchildrenwhohaveonlyhearingorvisionloss.
Whenbothvisionandhearingareaffected,especiallyfrombirthor
earlyinlife,naturalopportunitiestolearnandcommunicatecanbe
severelylimited.
Morethan90%ofchildrenwhoaredeafblindhaveoneormoreaddi
tionaldisabilitiesorhealthproblemsandsomemaybeidentifiedas
havingmultipledisabilitiesratherthandeafblindness.Inthesecases,
theimpactofcombinedhearingandvisionlossmaynotberecognized
oraddressed.
Training and Support
I
tiscriticalthatfamiliesandeducatorshaveaccesstotrainingand
supportfortheassessmentandeducationofinfants,children,and
youthwhoaredeafblind.Eachstatehasafederallyfundedtechnical
assistanceprojecttoprovidethistrainingandsupport.Forinformation
contacttheNationalConsortiumonDeafBlindness:
Phone:8004389376TTY:8008547013
Email:info@nationaldb.org
Page 2
Causes of Deaf-Blindness
T
herearemanycausesofdeafblindness.Thosethatarepresentor
occuraroundthetimeachildisbornincludeprematurity,childbirth
complications,andnumerouscongenitalsyndromes,manyofwhichare
quiterare.Deafblindnessmayalsooccurlaterinchildhoodorduring
adulthoodduetocausessuchasmeningitis,braininjury,orinherited
conditions.
ManyexpertsintheUnitedStatesandothercountriesbelievethatthe
populationofchildrenwhoaredeafblindhasbecomemoreseverely
disabledoverthepastseveraldecades.Thismaybedue,inpart,to
advancesinmedicaltechnologythathaveincreasedthesurvivalrates
forprematureinfantsandchildrenwithveryseriousconditions,who
arealsodeafblind.
However,deafblindnessisnotalwaysassociatedwithadditionaldis
abilities.Forexample,UsherSyndrome,aninheritedconditionthat
causeshearinglossandprogressivevisionloss,isnottypicallyassoci
atedwithothersignificantchallenges.
N
ationalDeafBlindChildCountdatashowsthatalthoughchildren
whoaredeafblindareeducatedinavarietyofsettings,mostare
educatedseparatelyfromstudentswhodonothavedisabilities.
InfantsandToddlers
Seventypercentofchildrenwithdeafblindnessfrombirththroughage
2receiveearlyinterventionservicesathome.Therestaretypically
servedinspecializedsettingssuchashospitals,clinics,earlyinterven
tioncenters,andresidentialfacilities.
Preschool
Seventytwopercentofchildrenaged3through5areinspecialeduca
tionclassrooms,separateschools,orresidentialfacilities.Only20%
areinclassroomswithyoungchildrenwhodonothavedisabilities,and
5%areeducatedathome.
Schoolage
Mostchildrenandyouthaged6through21arealsoeducatedapart
fromstudentswhodonothavedisabilities:
39%inseparateclassrooms
16%inseparatepublicschools
10%inpublicorprivateresidentialfacilities
8%inseparateprivateschools
7%inhospitalsorathome
5%inothersettings
Only15%areeducatedinregularclassroomsandresourcerooms.
Educational Settings
MostCommonCausesof
DeafBlindnessin
ChildrenintheU.S.
Heredity
Prematurity
Prenatalcomplications
Postnatalcomplications
CHARGESyndrome
Microcephaly
Cytomegalovirus
Hydrocephaly
Meningitis
UsherSyndrome
Race/Ethnicityof
ChildrenWhoAre
DeafBlind
56%White
14%Black
12%HispanicandLatino
3%AsianandPacific
Islander
2%AmericanIndianand
AlaskaNative
13%Other
DatafromKilloran,J.(2007).Thena
tionaldeafblindchildcount:19982005
inreview.Monmouth,OR:NTAC.
Page 3
InreviewingtheNationalDeafBlindChildCountdatasubmittedovertheyears,itisclearthatnosingle
portraitcanbepaintedtorepresentatypicalchildwithdeafblindness.Childrenwhoaredeafblindare
asvariedasthenumberreported.Thephotographsandstoriesbelowillustratethisdiversity.
BJ,age2,isfromKosrae,anislandin
Micronesia.HenowlivesinHawaiiwith
hisparentsandsisterandattendsaspe
cialeducationpreschool.Hehasacon
ductivehearinglossandvisionloss
causedbyopticnervedamage.BJloves
toexplorehisenvironmentandenjoys
activitiesthatinvolvemovement,vibra
tion,orrhythm.Helikestoswing,jump,
andwrestle.Healsolikesmusic
(especiallydrumsandkeyboards)and
toysthatlightup,makesounds,orvi
brate.
Malikis11andlivesinNorth
Carolina.HehasCHARGESyn
drome,aconditionthatcan
causehearingloss,visionloss,
otherdisabilities,andmedical
problems.Malikattendsthe
EasternNorthCarolinaSchoolfor
theDeaf,whereheisinaspecial
needsclassroom.Heispro
foundlydeafandvisuallyim
paired.MalikusesAmericanSignLanguagetocommunicate,
chooseshisownmeals,andevencarriesawallet.Heisknown
astheLittleKingtohisfamily,teachers,anddoctors,and
withtheirloveandsupport,hehasthrived.
Brittany,age14,liveswithhergrand
parentsinPennsylvania.Shewasborn
prematurely,andshehascorticalvis
ualimpairmentandisdeafanddevel
opmentallydelayed.Throughouther
life,Brittanyhashadmanyhealth
problems,includingasthma,pneumo
nia,scoliosis,andkidneyfailure(she
hadakidneytransplantin2003).She
nowattendsOverbrookSchoolforthe
Blind,andhergoalsaretoliveinde
pendently,findproductiveemployment,andhaveanactive
sociallife.Brittanyenjoysexploringthingswithherhandsand
otheractivitiesthattakeadvantageofhersenseoftouch.
Divyais21andhasUsherSyn
drome.Shehashearingloss,
nightblindness,andtunnelvi
sion,whichareallcharacteris
ticofthiscondition.Divyais
fluentinAmericanSignLan
guage(ASL)andhasaco
chlearimplant.Shelivesin
Florida,wheresheisasenior
atherlocalhighschool.Sheis
fullyincludedandusesinter
preters.WhenDivyagradu
ates,sheplanstoattenda2
yearcollegeandearnadegree
orcertificateinafieldthatwill
allowhertohelppeopleand
useherASLskills.Indian
danceisoneofherspecialin
terests.Shewonthebesttal
entawardtwoyearsinarow
attheFloridaSchoolforthe
DeafandtheBlind(FSDB)Tal
entShow,andwasalso
crownedMissFSDB.Sheper
formedwithotherstudentsat
theSuperBowlin2005.
Profiles
ThispublicationwaspreparedbyPeggyMalloyandJohn
KilloranattheNationalConsortiumonDeafBlindness
(NCDB),withdesignandlayoutbyBetsyMartin
Richardson,NCDB.
Deafblindnessisvariedandcomplex.
Childrenwithdeafblindnessareasdiverseas
thenumberofchildrenreported.
Earlyidentificationandinterventionarecritical.
Childrenandyouthwhoaredeafblindoften
haveotherdisabilities.
Trainingandsupportareavailablethroughfed
erallyfundedtechnicalassistanceprojectsin
eachstate.
Key Points
Killoran,J.(2007).Thenationaldeafblindchild
count:19982005inreview.Monmouth,OR:Na
tionalTechnicalAssistanceConsortiumforChildren
andYoungAdultswhoareDeafBlind(NTAC),
TeachingResearchInstitute,WesternOregonUni
versity.Availableathttp://nationaldb.org/
NCDBProducts.php?prodID=57
Kimberling,W.J.(2004).Genetichearinglossas
sociatedwitheyedisorders.InH.V.Toriello,W.
Reardon,&R.J.Gorlin(Eds.),Hereditaryhearing
lossanditssyndromes(pp.126165).NewYork:
OxfordUniversityPress.
Brown,D.,&Bates,E.(2005,Spring).Apersonal
viewofchangesindeafblindpopulation,philoso
phy,andneeds.DeafBlindPerspectives,12(3),1
5.
Resources
Foradditionalresourcesandinformation
aboutchildrenwhoaredeafblind,goto
www.nationaldb.org.
ThepurposeofNCDBPracticePerspectivesistoexpandandbroadentheuseofcurrentinformationresourcesby
developingeasilyunderstandableproductswithaccessibleformats.
FundedthroughAward#H326T060002bytheU.S.DepartmentofEducation,OSERS,OSEP.Theopinionsand
policiesexpressedbythispublicationdonotnecessarilyreflectthoseofTheTeachingResearchInstituteorthe
U.S.DepartmentofEducation.
TheTeachingResearchInstitute
WesternOregonUniversity
345NorthMonmouthAvenue
MonmouthOR97361
National Consortium
on Deaf-Blindness
Voice:800.438.9376
TTY:800.854.7013
Fax:503.838.8150
Email:info@nationaldb.org
Web:www.nationaldb.org
National Deaf-Blind Child Count
D
etailsaboutthepopulationofchildrenwith
deafblindnessprovideeducatorsandpolicy
makerswithinformationtoguidethedevelopment
ofservicestomeettheearlyinterventionandedu
cationalneedsofthesechildren.TheNational
DeafBlindChildCounthasbeenconductedforthe
U.S.DepartmentofEducationsOfficeofSpecial
EducationProgramssince1986.Thedataarecol
lectedbystateprojectsforchildrenandyouthwho
aredeafblindandcompiledbytheNationalCon
sortiumonDeafBlindness.
Formoreinformationgoto:
www.nationaldb.org/TAChildCount.php
Page 4