Carianne Muse|Judy A. Harrison|Christine Yoshinaga?Itano|Alison Grimes|Patrick E. Brookhouser|Stephen K. Epstein|Craig A. Buchman|Albert L. Mehl|Betty R. Vohr|Mary Pat Moeller|Patti Martin|Beth S. Benedict|Bobbie Scoggins|Jodee Crace|Michelle A King|Alice Sette|Beth A. Martin
Supplement to the JCIH 2007 Position Statement: Principles and Guidelines for Early Intervention After Confirmation That a Child Is Deaf or Hard of Hearing
document supplement recommendations year 2007 position statement joint committee infant hearing jcih1 provides comprehensive guidelines early hearing detection intervention ehdi programs establishing strong early intervention ei systems appropriate expertise meet needs children deaf hard hearing dhhei services represent purpose goal entire ehdi process screening confirmation child dhh largely meaningless without appropriate individualized targeted highquality intervention infant young child dhh reach full potential carefully designed individualized intervention must implemented promptly utilizing service providers optimal knowledge skill levels providing services basis research best practices proven modelsthe delivery ei services complex requires individualization meet identified needs child family diverse needs population children dhh families wellcontrolled intervention studies challenging time comparative effectiveness studies conducted randomized controlled trials particularly difficult ethical reasons making challenging establish causal links interventions outcomes ei systems must partner colleagues research document works children families strengthen evidence base supporting practicesdespite limitations gaps evidence literature contain research studies children dhh access welldefined ei service studies indicate positive outcomes possible provide guidance key program components appear promote outcomes ei services document drafted teams professionals extensive expertise ei programs children dhh families relied literature searches existing systematic reviews recent professional consensus statements developing set guidelines eg refs 2 3 hm schachter tj clifford e fitzpatrick eatmon morag showler jc johnston sampson moher unpublished data 2002terminology presented challenge throughout document development committee noted many frequently occurring terms necessary within supplement may reflect contemporary understanding andor could convey inaccurate meaning rather add lack clarity consensus avoid introducing new terminology stakeholders committee opted use currently recognized terms consistently herein monitor emergence andor development new descriptors next jcih consensus statementfor purposes supplementthis supplement jcih 2007 focuses practices ei providers outside primary medical care specialty medical care realms rather including full spectrum necessary medical audiologic educational interventions information recommendations medical followup primary care surveillance related medical conditions specialty medical care monitoring reader encouraged reference year 2007 position statement jcih1 well subsequent revision infant confirmed dhh importance ongoing medical audiologic management surveillance medical home hearing health professionals otolaryngologist audiologist cannot overstated comprehensive discussion services beyond scope documentsince first universal newborn hearing screening programs established early 1990s significant progress occurred development implementation protocols screening audiologic evaluation fitting amplification medical management children dhh support services families despite progress provision highest quality ei infantschildren dhh families remains urgent priority centers disease control prevention cdc reported 969 newborns screened 20087 united states evidence earlier identification children dhh accompanied timely appropriate interventions result language communication cognitive socialemotional skills consistent childrens cognitive abilities chronological age810 ultimate goal ehdi optimize language social literacy development children dhhalthough first ehdi programs united states established 20 years ago statesterritories yet able provide documentation outcomes resulting ei services lacking documentation unclear whether stateterritory systems accomplishing goal preventing minimizing communicative delays typically observed lateidentified children dhh ehdi programs complex systems requiring high degree collaboration local stateterritory national levels among families birthing hospitals audiologists physicians educational personnel speechlanguage pathologists state health educational agencies private service providers leaders dhh support networks personnel constraints financial limitations lack existing systems hindered attainment ehdi goals11 supplement designed provide support development accountable appropriate ei followthrough systems goals stated within document begin baseline measure specific stateterritory goal program show annual improvements lead 90 attainment goal end 5year periodan optimal ei service team centers around family includes professionals pediatric experience specific professionals team individualized basis family needs list professionals may include limited audiologist teacher dhh speechlanguage pathologist service coordinator individuals dhh representatives familytofamily support networks depending needs child also could include physical therapists occupational therapists psychologists educators expertise deafblind developmental delay andor emotionalbehavioral issuesthis best practice document implementation ei services habilitative rehabilitative educational intended assist stateterritory ehdi systems optimizing development wellbeing infantschildren families another goal document facilitate development systems capable continuously evaluating improving quality care infantschildren dhh families finally document outlines best practices promote quality assurance ei programs children birth age 3 years familiesscreening hearing newborns creates opportunity guarantee optimal outcomes timely access quality ei providers critical component successful system colorado edhi program example program able collect comprehensive outcome data due implementation ei consistent ei program eg criteria selection ei providers professional development inservice training mentoring standard protocol developmental assessments regular intervals colorado ehdi system established 1992 focused timely coordinated access ei statewide data management ensure followthrough beginning 1995 continuing present series articles colorado system published studies 500 different infant participants dhh additional disabilities hearing parents studies included longitudinal data 146 children infancy 7 years age almost earlyidentified timely access appropriate consistent ei system12 average children achieved ageappropriate developmental outcomes first 3 years life101316 age 791718 pippsiegel sedey yoshinagaitano 2001 studies provided support findings1920 moeller study8 published establishing universal newborn hearing screening studied children consistent ei services programpart c idea requires infants toddlers disabilities receive ei services birth age 3 years5these services provided according individualized family service plan ifsp barrier development comprehensive systems children dhh lack coordination local state part c programs state ehdi programs existing systems children dhh accomplish goals monitoring tracking children dhh strong partnership part c necessary national stateterritory local levels current time tracking systems universal screening confirmation child dhh enrollment ei developmental outcomes developed many statesterritories currently coordinated systems7loss documentation loss followup rates threats effectiveness ehdi systems reduction losses high priority strengthen development ehdi systems continuously updated data reported cdc indicate significant number referrals lack documentation confirmatory audiologic evaluations andor enrollment ei estimated currently 1 4 children dhh successfully tracked ei system7 loss documentation ineligibility services eg infants unilateral hearing loss states also may contribute loss followup ratesthe service coordinator person responsible overseeing implementation ifsp coordinating agencies service providers person generally first point contact families service coordinator assists families gaining access services facilitates child family receiving information rights procedural safeguards services available within state coordinates assessments facilitates participates development ifsp coordinates monitors delivery servicesoptimally first contact family occur within days audiologic confirmation goal later week confirmatory testing individual first contact needs specialized knowledge experience include infancyearly childhood educational strategies infantstoddlers dhh families parent counseling especially adjustment counseling specific families children dhh development signed spoken language auditory speech cognitive socialemotional developmentindividuals make first contact must able answer parents questions deafness hearing loss provide support understanding technical concepts including following screening technologies audiologic diagnostic evaluations amplification choices communication choices communication development infancy early childhood including language auditory speech signing socialemotional domains resources relevant working infantstoddlers dhh medical details likelihood progression improvement hearing levels auditoryvisual technology eg frequency modulation systems fm systems light systems doorbells captionswhen parentscaregiversfamilies receive support professionals knowledgeable infantschildren dhh families emotional bonding parents infants may facilitated parental stress similar hearing parents possible parental acceptance likely pippsiegel sedey yoshinagaitano 20012226 service coordinators colorado ei program specialists ei services families children dhh studies examining outcomes colorado ei program descriptive studies could examine whether causal relationship exists provider expertise socialemotional characteristics however studies reveal program specialized service coordinators ei service providers related positive family child socialemotional outcomes addition evidence literature parents experience negative emotions service coordination provided individuals without core knowledge skills working children dhh27statesterritories need ensure ei providers meet least minimum criteria experience skills necessary serve infants dhh families shortage qualified professionals important system building capacity exists preservice inservice mentoring levels primary goal ei program promote childrens development strong language skills regardless route routes taken family eg spoken language american sign language asl visually supported spoken language goal critical widely recognized welldeveloped language skills serve foundation communication literacy attainment28 goal 3 appendix 1 promotes reliance qualified providers recommends processes ensuring families access goals 3a 3b intended mutually exclusive rather describe key quality elements providers using spoken visual languages systems manually code cue spoken language included goals 3a 3b distinct languages however approaches implemented families competencies described apply purpose goal 3 ensure families children qualified providers regardless approach taken develop communicationthe purpose recommendations assist states territories provision highquality ei throughrecent research suggests outcomes young children families better providers specialized training specific working infants toddlers dhh families although evidence needed89192931 professional consensus statements acknowledge need service providers specific training serving children dhh3233 survey specialists 17 organizations interests area ei children strongly supported need identify set core competencies ei specialists working children dhh sasslehrer stredlerbrown mpm unpublished data 2008ei providers wide range disciplinary backgrounds34 may sufficient preservice course work andor practicum experiences address needs children dhh birth age 3 years families result may lack core knowledge skills work population effectively mvcompton ja niemeyer e shroyer unpublished data 2001 sasslehrer stredlerbrown n hutchinson k tarasenko mpm k clark unpublished data 20103538approximately onethird states united states professional certification credential includes children dhh birth age 3 sasslehrer stredlerbrown n hutchinson k tarasenko mpm k clark unpublished data 2010 however standards vary widely may specifically include course work field experiences address needs infants toddlers dhh familiesat institutions specific children dhh wide range disciplinary backgrounds limited preservice training opportunities create need systematic capacity building various disciplines working children dhh appropriate professional development guidelines support theory evidencebased practice must established evaluation training training outcomes essential quality professional training ultimately reflected impact child family outcomes wide variations skills providers developmental outcomes children dhh exist throughout united states territoriespersonnel development guidelines need accordance existing legal requirements part c idea4 requirements state territory eg credentials qualifications ei specialistsa system highly qualified ei service providers must available families across spectrum communication choices area particularly deficient families choose asl access ei provider fluentnative asl signer3940families children dhh process learning asl require access competent fluent language models ei systems competency fluency ensured among ei providers establish basic grammatical foundations visual language learning newborn infant dhh access competent fluent language models vital4142 however although fluency language model necessary sufficient make professional qualified provide ei services families children newly identified also need information resources ei professionals provide enriched language environment supports childs early language learning example skihi institute deaf mentor program model provide resources training people dhh support familys learning asl families given resources support acquiring asl collaboration professionals dhh communicate asl skihis deaf mentor program adults dhh role models young child family members child family learn asl introduced various deaf culture events skihi institute conducted 3year study entitled deaf mentor experimental project young children deaf families found children hearing parents exposed bilingual culturally competent environment deaf mentor services positive outcomes children beginning knowledge use asl also developing english skills faster rate children receive deaf mentor services received services solely skihi parent advisor40the development listening spoken language skills attainable vast majority infantschildren dhh without severe additional disabilities identified early provided early appropriate ei services beginning fitting amplification ensures audibility across speech spectrum native spoken language44 consensus professionals specialize intervention listening spoken language children dhh skills frequently mastered typical preservice training programs educators deaf speech language pathologists audiologists32competent service delivery systems series checks balances well crosscheck processes ensure fidelity intervention example ei provider able share information regarding childs behavior response sound across speech frequencies childs audiologist information assist audiologist fitting optimizing verifying childs hearing aids system ensure maximal audibility provided child thus offering child optimal access spoken language addition ei provider alert changes infantchilds hearing capabilities occur due permanent medically treatable causes changes likely progression hearing loss although improvement fluctuation hearing sensitivity also occur ei specialists need able individualize services childs current auditory capabilities technology addition ei provider needs expertise regarding listening spoken language developmental hierarchies ability use diagnostic teaching ensure auditory linguistic strategies used effectiveresearch indicates sensitive periods development auditory skills spoken language specifically first 5 years childs life critical development areas104546 optimize short time period childs life families infantschildren dhh require highest level provider skills beginning childs lifeunfortunately ei systems currently provide limited access professionals expertise listening spoken language collect systemwide outcome data childrens development listening spoken language skills47 data essential ensure families children received highquality intervention targeted outcomes many ei systems offer professional development opportunities ensure continuous improvement ei providers offer consultationmentorship andor direct observation guarantee fidelity intervention implementation critical areas need best practices listening spoken language establishedit estimated previous studies 35 40 children dhh disabilities addition deafness1049 additional disabilities often affect childs ability access use language little empirical information available development first 6 years life children dhh additional disabilities however appropriate ei services result similar advantages children dhh additional disabilities children dhh only101350 children dhh identified 6 months age cognitive skills ranging quotients 20 80 demonstrated significantly better language scores lateridentified children multiple disabilities first 3 5 years life earlyidentified received timely ei services1050for children dhh additional disabilities may determined hearing loss primary disability regardless primary disability however critical recognize primacy communication learning impact communicative delays developmental domains therefore team professionals serving child must include specialized expertise meeting communication access needs childei specialists serving children dhh additional disabilities able tothe number culturally linguistically diverse children dhh united states territories continually rising major urban areas states number culturally diverse occupants majority rapid growing population children dhh living homes primary language english families use asl language communication within home also culturally linguistically diverse population additional aspect diversity significant portion families limited levels literacy parental education andor family income families high risk failure access benefit traditional educational services however research within united states revealed possible deliver ei services result appropriate development children families culturally diverse backgrounds101750it important information provided families quality quantity provided native english speakers delivered manner accessible families even culturally diverse families able communicate successfully spoken english asl may values beliefs affect understanding acceptance information conveyed ei values beliefs may also affect ability willingness follow recommendations therefore essential manner information delivered respectful beliefs values families countries origin5152spoken languages throughout world differences phonology semantics syntaxgrammar pragmatics child successfully develop spoken language skills language must access highquality instruction language5355 thus ei providers need learn adapt auditory skill development strategies teaching spoken english acoustic characteristics familys native language family chooses spoken language approachlike spoken languages visual language systems unique differ around world however unlike spoken language many families knowledgeable native signed languages therefore introduction asl visual systems used united states often appropriate chosen familythe current idea part c developmental assessment children disabilities designed demonstrate ei services remediate developmental delay infantstoddlers children disabilities contrast ehdi systems established prevention amelioration developmental delays often associated children dhh thus developmental assessment population designed ensure children mastering developmental skills appropriate age cognitive functioning earlier identification children dhh established goal prevention delay remediation delaythe urgency providing appropriate ei services supported evidence reduced limited success ei strategies initiated sensitive period language auditory development810 goal ei services infantschildren dhh provide sufficient support ensure child makes appropriate progress toward expected developmental objectives best opportunity accomplish goal prevention developmental disability therefore progress monitoring done instruments normreferenced assessment tools appropriate language communication system used childmonitoring developmental progress provides parentsfamilies ei providers objective data individual rate childs development guide decision making addition systematic monitoring developmental progress potential provide statesterritories local educational agencies individual early childhood programs information guide system change continuous improvement identifying strengths weaknesses within systemchildren hearing loss risk academic failure math reading delayed language development progression worsening hearing loss andor psychosocial delays finding revealed number studies past 35 years populations types degrees hearing loss5665 children diagnosed unilateral hearing loss may experience onset progression hearing loss formerly normal hearing ear6266children relatively lesser degrees hearing loss may experience fluctuationprogression severe ranges yoshinagaitano c unpublished data 2011 children auditory neural hearing loss auditory neuropathy spectrum disorder found significant delays communication speech spoken visual language psychosocial skills literacy development general developmental profiles similar children sensory deafness6769very little known developmental outcomes children permanent sensorineural hearing loss experience fluctuation due conductive hearing losses children hearing loss increased risk increased hearing loss presence otitis media compared children normal hearing number children hearing loss craniofacial anomalies syndromes syndrome appropriate amplification fitting audiologic monitoring required children maintain optimal developmental progressconsistent frequent audiologic monitoring important children dhh type hearing loss however audiologic medical followup children audiologic categories c