statement of endorsement supplement to the jcih...

STATEMENT OF ENDORSEMENT

Supplement to the JCIH 2007 Position Statement:Principles and Guidelines for Early Intervention AfterConfirmation That a Child Is Deaf or Hard of Hearing

PREFACE

This document is a supplement to the recommendations in the year2007 position statement of the Joint Committee on Infant Hearing(JCIH)1 and provides comprehensive guidelines for early hearingdetection and intervention (EHDI) programs on establishing strongearly intervention (EI) systems with appropriate expertise to meet theneeds of children who are deaf or hard of hearing (D/HH).

EI services represent the purpose and goal of the entire EHDI process.Screening and confirmation that a child is D/HH are largely mean-ingless without appropriate, individualized, targeted and high-qualityintervention. For the infant or young child who is D/HH to reach his orher full potential, carefully designed individualized intervention mustbe implemented promptly, utilizing service providers with optimalknowledge and skill levels and providing services on the basis ofresearch, best practices, and proven models.

The delivery of EI services is complex and requires individualization to meetthe identified needs of the child and family. Because of the diverse needs ofthe population of children who are D/HH and their families, well-controlledintervention studies are challenging. At this time, few comparative effec-tiveness studies have been conducted. Randomized controlled trials areparticularly difficult for ethical reasons, making it challenging to establishcausal links between interventions and outcomes. EI systems must partnerwith colleagues in research to document what works for children andfamilies and to strengthen the evidence base supporting practices.

Despite limitations and gaps in the evidence, the literature doescontain research studies in which all children who were D/HH hadaccess to the same well-defined EI service. These studies indicate thatpositive outcomes are possible, and they provide guidance about keyprogram components that appear to promote these outcomes. This EIservices document, drafted by teams of professionals with extensiveexpertise in EI programs for children who are D/HH and their families,relied on literature searches, existing systematic reviews, and recentprofessional consensus statements in developing this set of guidelines(eg, refs 2 and 3; H.M. Schachter, T.J. Clifford, E. Fitzpatrick, S. Eatmon,M. Morag, A. Showler, J.C. Johnston, M. Sampson, and D. Moher, un-published data, 2002).

JOINT COMMITTEE ON INFANT HEARINGCarianne Muse, MPH, Judy Harrison, MA, ChristineYoshinaga-Itano, PhD, Alison Grimes, AuD, Patrick E.Brookhouser, MD, Stephen Epstein, MD, Craig Buchman,MD, Albert Mehl, MD, Betty Vohr, MD, Mary Pat Moeller,PhD, Patti Martin, PhD, Beth S. Benedict, PhD, BobbieScoggins, EdD, Jodee Crace, MA, Michelle King, MS, AliceSette, AuD, and Beth Martin, MA

KEY WORDShearing loss, hearing screening, hearing impairment, deafness,audiology

ABBREVIATIONSASL—American Sign LanguageCDC—Centers for Disease Control and PreventionD/HH—deaf or hard of hearingEHDI—early hearing detection and interventionEI—early interventionIDEA—Individuals with Disabilities Education Improvement ActIFSP—individualized family service planJCIH—Joint Committee on Infant Hearing

This document is copyrighted and is property of the AmericanAcademy of Pediatrics and its Board of Directors. All authorshave filed conflict of interest statements with the AmericanAcademy of Pediatrics. Any conflicts have been resolved througha process approved by the Board of Directors. The AmericanAcademy of Pediatrics has neither solicited nor accepted anycommercial involvement in the development of the content ofthis publication.

All policy statements from the American Academy of Pediatricsautomatically expire 5 years after publication unless reaffirmed,revised, or retired at or before that time.

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Terminology presented a challengethroughout document development.The committee noted that many of thefrequently occurring terms necessarywithin the supplement may not reflectthe most contemporary understandingand/or could convey inaccurate mean-ing. Rather than add to the lack ofclarity or consensus and to avoid in-troducing new terminology to stake-holders, the committee opted to usecurrently recognized terms consis-tently herein and will monitor theemergence and/or development ofnew descriptors before the next JCIHconsensus statement.

For purposes of this supplement:

Language refers to all spoken andsigned languages.Early intervention (EI), according topart C of the Individuals with Dis-abilities Education ImprovementAct (IDEA) of 2004,4 is the processof providing services, education,and support to young childrenwho are deemed to have an estab-lished condition, those who areevaluated and deemed to have a di-agnosed physical or mental condi-tion (with a high probability ofresulting in a developmental delay),those who have an existing delay, orthose who are at risk of developinga delay or special need that mayaffect their development or impedetheir education.5

Communication is used in lieu ofterms such as communication op-tions, methods, opportunities, ap-proaches, etc.Deaf or hard of hearing (D/HH) isintended to be inclusive of all chil-dren with congenital and acquiredhearing loss, unilateral and bilat-eral hearing loss, all degrees ofhearing loss from minimal to pro-found, and all types of hearing loss(sensorineural, auditory neuropathyspectrum disorder,6 permanent con-ductive, and mixed).

Core knowledge and skills is usedto describe the expertise needed toprovide appropriate EI that will op-timize the development and well-being of infants/children and theirfamilies. Core knowledge and skillswill differ according to the roles ofindividuals within the EI system (eg,service coordinator or EI provider).

This supplement to JCIH 2007 focuseson the practices of EI providers outsideof the primary medical care andspecialty medical care realms, ratherthan including the full spectrum ofnecessary medical, audiologic, andeducational interventions. For moreinformation about the recommen-dations for medical follow-up, primarycare surveillance for related medicalconditions, and specialty medical careand monitoring, the reader is en-couraged to reference the year 2007position statement of the JCIH1 as wellas any subsequent revision. When aninfant is confirmed to be D/HH, theimportance of ongoing medical andaudiologic management and surveil-lance both in the medical home andwith the hearing health professionals,the otolaryngologist and the audiolo-gist, cannot be overstated. A compre-hensive discussion of those servicesis beyond the scope of this document.

INTRODUCTION

Since the first universal newbornhearing screening programs wereestablished in the early 1990s, signif-icant progress has occurred in thedevelopment and implementation ofprotocols for screening, audiologicevaluation, fitting of amplification,medical management of children whoare D/HH, and support services forfamilies. Despite this progress, pro-vision of the highest quality EI forinfants/children who are D/HH andtheir families remains an urgent pri-ority. The Centers for Disease Controland Prevention (CDC) reported that

over 96.9% of all newborns werescreened in 2008.7 In the UnitedStates, there is evidence that earlieridentification of children who are D/HH, accompanied by timely and ap-propriate interventions, can result inlanguage, communication, cognitive,and social-emotional skills that areconsistent with children’s cognitiveabilities and chronological age.8–10

The ultimate goal of EHDI is to optimizelanguage, social, and literacy develop-ment for children who are D/HH.

Although the first EHDI programs in theUnited States were established morethan 20 years ago, most states/territories are not yet able to pro-vide documentation of outcomesresulting from EI services. Lackingsuch documentation, it is unclearwhether state/territory systems areaccomplishing the goal of preventingor minimizing communicative delaystypically observed in late-identifiedchildren who are D/HH. EHDI pro-grams are complex systems requiringa high degree of collaboration at local,state/territory, and national levelsamong families, birthing hospitals,audiologists, physicians, educationalpersonnel, speech-language patholo-gists, state health and educationalagencies, private service providers,leaders who are D/HH, and supportnetworks. Personnel constraints, fi-nancial limitations, and the lack ofexisting systems have hindered at-tainment of some of the EHDI goals.11

This supplement is designed to providesupport for the development of ac-countable and appropriate EI follow-through systems. All goals stated withinthis document should begin with abaseline measure specific to eachstate/territory. The goal should be forthe program to show annual improve-ments that lead to 90% attainment ofthe goal at the end of a 5-year period.

An optimal EI service team centers aroundthe family and includes professionals

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with pediatric experience. The specificprofessionals on each team should beindividualized on the basis of familyneeds. This list of professionalsmay include, but is not limited to,an audiologist, teacher of the D/HH,speech-language pathologist, servicecoordinator, individuals who are D/HH,and representatives of family-to-family support networks. Dependingon the needs of the child, it also couldinclude physical therapists, occupa-tional therapists, psychologists, andeducators with expertise in deaf/blind,developmental delay, and/or emotional/behavioral issues.

BEST PRACTICE GUIDELINES

This best practice document for theimplementation of EI services (habil-itative, rehabilitative, or educational)is intended to assist the state/territoryEHDI systems in optimizing the de-velopment and well-being of infants/children and their families. Anothergoal of this document is to facilitatethe development of systems that arecapable of continuously evaluating andimproving the quality of care forinfants/children who are D/HH andtheir families. Finally, this documentoutlines best practices to promotequality assurance of EI programs forchildren from birth to age 3 years andtheir families.

Goal 1: All Children Who Are D/HHand Their Families Have Access toTimely and Coordinated Entry IntoEI Programs Supported by a DataManagement System Capable ofTracking Families and ChildrenFrom Confirmation of Hearing Lossto Enrollment Into EI Services

Rationale

Screening hearing in newborns cre-ates an opportunity but it does notguarantee optimal outcomes. Timelyaccess to quality EI providers isa critical component of a successful

system. The Colorado EDHI program isan example of a program that has beenable to collect comprehensive outcomedata due to the implementation of EIand a consistent EI program (eg, cri-teria for selection of EI providers,professional development through in-service training and mentoring,a standard protocol of developmentalassessments at regular intervals). TheColorado EHDI system was establishedin 1992 and focused on timely andcoordinated access to EI with state-wide data management to ensurefollow-through. Beginning in 1995 andcontinuing to the present, a series ofarticles on the Colorado system waspublished. These studies had over 500different infant participants who wereD/HH, who had no additional dis-abilities, and who had hearing parents.The studies included longitudinal dataon 146 children from infancy through 7years of age. Almost all were early-identified and had timely access toan appropriate and consistent EI sys-tem.12 On average, these children ach-ieved age-appropriate developmentaloutcomes not only in the first 3 yearsof life10,13–16 but through age 79,17,18

(Pipp-Siegel, Sedey, & Yoshinaga-Itano,2001). Other studies provided supportfor these findings,19,20 but only theMoeller study,8 published before estab-lishing universal newborn hearingscreening, studied children from a con-sistent EI services program.

Part C of the IDEA requires that infantsand toddlers with disabilities receive EIservices from birth to age 3 years.5

These services are provided accord-ing to an individualized family serviceplan (IFSP). A barrier to the de-velopment of comprehensive systemsfor children who are D/HH is the lackof coordination between local andstate part C programs, state EHDIprograms, and existing systems forchildren who are D/HH. To accomplishgoals for monitoring and tracking

children who are D/HH, a strongpartnership with part C will be nec-essary at the national, state/territory,and local levels. At the current time,tracking systems from universalscreening to confirmation that a childis D/HH, to enrollment in EI, and todevelopmental outcomes are beingdeveloped in many states/territories,but there are currently only a fewcoordinated systems.7

Loss to documentation and loss tofollow-up rates are threats to the ef-fectiveness of EHDI systems. Reductionin these losses is a high priority tostrengthen the development of EHDIsystems. Continuously updated datareported to the CDC indicate thata significant number of referrals lackdocumentation of confirmatory audi-ologic evaluations and/or enrollmentin EI. It is estimated that currently only1 in 4 children who are D/HH aresuccessfully tracked to an EI system.7

Loss to documentation and ineligibilityfor services (eg, infants with unilateralhearing loss in some states) also maycontribute to loss to follow-up rates.

Recommendations

1. Share a baseline analysis of EHDIfollow-up statistics with part C toestablish collaboration and to iden-tify system gaps or needs regard-ing statistics to be reviewed, suchas (1) confirmation/identificationof children who are D/HH and (2)their enrollment in EI services.

� Identify the referral processoperating within the state/territory. Establish a timely, co-ordinated system of entry intoEI services. Ensure that pro-viders have the core knowledgeand skills necessary to optimizethe overall development andwell-being of children and theirfamilies. Identify methods to re-port and track individual childrenfrom audiologic confirmation to

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developmental outcomes. Theseidentified methods often involvecoordination between part Cat the state or local levels andexisting systems of EI for chil-dren who are D/HH. Delineateclear and agreed upon responsi-bilities for all participating agen-cies, including the developmentof specific timelines and desig-nation of specific positions forcommunication and reportingresponsibilities. Schedule feed-back mechanisms minimally ona quarterly basis (eg, the fre-quency with which participatingagencies will report to the statedatabase regarding enrollmentinto EI). Develop a flowchart fordissemination of information/data.

� Collect, regularly analyze, andreport data on compliance withthe requirement for timely ac-cess to an EI system. Timely ac-cess is defined by this documentas referral to part C within 2days of audiologic confirmationand implementation of serviceswithin 45 days of referral. To ac-complish this goal, first EI con-tact with the family should occurwithin a week of referral. Thisschedule allows for time to com-plete the mandated developmen-tal assessment and IFSP withinthe 45-day timeline. Part C regu-lations established in 2011 pro-vide for referring a child assoon as possible, but in no casemore than 7 days, after the childhas been identified with deafness/hearing loss.

2. Develop a mechanism that ensuresfamily access to all available resour-ces and information that is accurate,well-balanced, comprehensive, andconveyed in an unbiased manner.

� Determine which entity will takeresponsibility for the development

and update of a state/territoryfamily resource manual.

� Monitor the development or ad-aptation of a family resourcemanual, available in differentlanguages and diverse formats(eg, written, captioned video/DVD/Web, video blog, or 3-ringbinders), with regular annualupdates and revisions that in-clude the following: (1) descrip-tion of all EI programs andproviders, (2) identified Web sitesrelated to deafness and hearingloss, (3) national organizations/resources for families, (4)terms and definitions relatedto deafness/hearing loss, (5) in-frastructure of state resourcesfor families, (6) services avail-able through part C, and (7)communication choices, defini-tions, and factors to consider.

� Develop a mechanism that en-sures that the information con-tained in the family resourcemanual provides parents/familieswith unbiased and accurate in-formation through review by thestate/territory EHDI committeeor other designated body (eg,parent organization, professionalcommittee). Implement an ongo-ing quality assurance mechanism(including evaluation) related tothe family resource manual.

� Implement a mechanism of dis-semination that ensures that allfamilies with newly identifiedchildren who are D/HH receivethe family resource manual andthat the information is reviewedwith the family and explained bythe service coordinator or EIprovider in a timely manner.Family-to-family support (dis-cussed below in goal 9) is aneffective mechanism for dissemi-nation of information.21 Ask fam-ilies of newly identified infants/

children who are D/HH annuallywhether they received the familyresource manual and if a servicecoordinator or EI provider re-viewed the information with them.

Goal 2: All Children Who Are D/HHand Their Families ExperienceTimely Access to ServiceCoordinators Who Have SpecializedKnowledge and Skills Related toWorking With Individuals Who AreD/HH

Rationale

The service coordinator is the personresponsible for overseeing the imple-mentation of the IFSP and coordinatingwith agencies and service providers.This person is generally the first pointof contact for families. The servicecoordinator assists families in gainingaccess to services; facilitates the childand family in receiving informationabout their rights, procedural safe-guards, and services available withintheir state; coordinates assessments;facilitates and participates in the de-velopment of the IFSP; and coordinatesand monitors the delivery of services.

Optimally, the first contact with the familyshould occur within days of the audio-logic confirmation, and the goal shouldbe no later than a week after confir-matory testing. The individual with firstcontact needs specialized knowledge andexperience that include infancy/earlychildhood, educational strategies forinfants/toddlers who are D/HH and theirfamilies, parent counseling (especiallyadjustment counseling specific tofamilies with children who are D/HH),development of signed and spokenlanguage, and auditory, speech, cogni-tive, and social-emotional development.

Individuals who make first contact mustbe able to answer parents’ questionsabout deafness and hearing loss andprovide support in understanding tech-nical concepts including the following:screening technologies; audiologic




diagnostic evaluations; amplificationchoices; communication choices; com-munication development from infancythrough early childhood, includinglanguage, auditory, speech, signing,and social-emotional domains; resour-ces relevant to working with infants/toddlers who are D/HH; medical detailssuch as likelihood of progression ofor improvement in hearing levels; andauditory/visual technology (eg, fre-quency modulation systems or “FM”systems, light systems, doorbells, orcaptions).

When parents/caregivers/families re-ceive support from professionals whoare knowledgeable about infants/children who are D/HH and theirfamilies, emotional bonding betweenparents and infants may be facilitated.Parental stress similar to that inhearing parents is possible and pa-rental acceptance is more likely (Pipp-Siegel, Sedey, & Yoshinaga-Itano,2001).22–26 Service coordinators inthe Colorado EI program were spe-cialists in EI services for families whohave children who are D/HH. Studiesexamining outcomes of the ColoradoEI program were descriptive studiesand could not examine whethera causal relationship exists betweenprovider expertise and these social-emotional characteristics. However,the studies did reveal that a programwith specialized service coordinatorsand EI service providers is related topositive family and child social-emotional outcomes. In addition, thereis evidence in the literature that someparents experience negative emotionswhen service coordination is providedby individuals without the core knowl-edge and skills for working with chil-dren who are D/HH.27

Recommendations

1. Develop or adapt qualifications forservice coordinators who contactfamilies after confirmation that their

child is D/HH. Collaborate with part Cin a manner that includes the exper-tise of the state EHDI team or an EHDItask force and EI specialists with ex-pertise in supporting children whoare D/HH. These state/territory guide-lines should identify the professionalqualifications (educational and expe-riential background) of service coor-dinators for children who are D/HHand their families.

2. Identify the core knowledge andskills for service coordinators onthe basis of evidence-based practi-ces and the recommendations ofprofessional organizations and na-tional policy initiatives. Implementstrategies to identify current skillsof service coordinators and gapsin their knowledge and skills relatedto serving families with childrenwho are D/HH. Establish and imple-ment professional development pro-grams that include training indissemination of information with-out bias. Provide resources andother supports to assist servicecoordinators in the acquisition ofcore knowledge and skills neededto promote successful outcomesfor the children and their families.

3. Identify the number and percentageof families who had timely accessto a service coordinator with skillsand expertise related to childrenwho are D/HH and their families.

Goal 3: All Children Who Are D/HHFrom Birth to 3 Years of Age andTheir Families Have EI ProvidersWho Have the ProfessionalQualifications and Core Knowledgeand Skills to Optimize the Child’sDevelopment and Child/FamilyWell-being

Rationale

States/territories need to ensure thatEI providers meet at least minimumcriteria for experience and skillsnecessary to serve infants who are

D/HH and their families. Because of theshortage of qualified professionals, itis important that a system for buildingcapacity exists at the preservice, in-service, and mentoring levels. A pri-mary goal of the EI program is topromote children’s development ofstrong language skills, regardless ofthe route or routes taken by thefamily (eg, spoken language, Ameri-can Sign Language [ASL], visuallysupported spoken language). Thisgoal is critical because it is widelyrecognized that well-developed lan-guage skills serve as a foundation forcommunication and literacy attain-ment.28 Goal 3 (and Appendix 1) pro-motes reliance on qualified providers,and recommends processes for en-suring that families access them.Goals 3a and 3b are not intended tobe mutually exclusive; rather, theydescribe key quality elements whenproviders are using spoken or visuallanguages. Systems that manuallycode or cue spoken language are notincluded in goals 3a or 3b becausethey are not distinct languages. How-ever, when these approaches areimplemented by families, the samecompetencies described below apply.The purpose of goal 3 is to ensure thatfamilies and children have qualifiedproviders, regardless of the approachtaken to develop communication.

The purpose of these recommenda-tions is to assist states and territoriesin the provision of high-quality EI through

� identification of the core knowledgeand skills for direct EI servicesproviders (eg, those who providedevelopmental, educational, andcommunication/language [includ-ing spoken and/or sign language]services; see Appendix 1);

� development of guidelines for thedelivery and evaluation of a systemof ongoing professional developmentfor direct EI service providers.


Recent research suggests that out-comes for young children and theirfamilies are better when providershave specialized training specific toworking with infants and toddlers whoare D/HH and their families, althoughmore evidence is needed.8,9,19,29–31

Professional consensus statementsacknowledge the need for serviceproviders with specific training inserving children who are D/HH.32,33 Asurvey of specialists from 17 organ-izations with interests in the area ofEI for children strongly supported theneed to identify a set of core com-petencies for EI specialists workingwith children who are D/HH (M. Sass-Lehrer, A. Stredler-Brown, M.P.M., un-published data, 2008).

EI providers have a wide range of dis-ciplinary backgrounds34 and may nothave sufficient preservice course workand/or practicum experiences thataddress the needs of children who areD/HH from birth to age 3 years andtheir families. As a result, they maylack core knowledge and skills to workwith this population effectively (M.V.Compton, J.A. Niemeyer, E. Shroyer,unpublished data, 2001; M. Sass-Lehrer,A. Stredler-Brown, N. Hutchinson,K. Tarasenko, M.P.M., K. Clark, unpublisheddata, 2010).35–38

Approximately one-third of all states inthe United States have a profes-sional certification or credential thatincludes children who are D/HHfrom birth to age 3 (M. Sass-Lehrer,A. Stredler-Brown, N. Hutchinson,K. Tarasenko, M.P.M., K. Clark, un-published data, 2010). However, thestandards vary widely and may notspecifically include course work andfield experiences that address theneeds of infants and toddlers who areD/HH and their families.

At most institutions specific to chil-dren who are D/HH, the wide range ofdisciplinary backgrounds and limitedpreservice training opportunities

create a need for systematic capacitybuilding. For the various disciplinesworking with children who are D/HH,appropriate professional develop-ment guidelines that support theoryand evidence-based practice mustbe established. Evaluation of trainingand training outcomes is essential,because the quality of the professionaltraining is ultimately reflected in theimpact on child and family outcomes.Wide variations in the skills of theproviders and the developmental out-comes of children who are D/HH existthroughout the United States and itsterritories.

Personnel development guidelines needto be in accordance with the existinglegal requirements of part C of theIDEA4 and with the requirements ineach state or territory (eg, credentialsor qualifications for EI specialists).

Recommendations

1. Adopt and implement guidelinesthat address the professional qual-ifications required for providingfamily-centered EI to families andchildren who are D/HH frombirth to age 3. These guidelines willaddress educational backgroundand core knowledge and skills forproviders of EI services in areas, in-cluding developmental, educational,and communication/language.

2. Ensure that stakeholders participatein the adoption and implementationof these guidelines. Stakeholder cat-egories will include, at minimum, thestate EHDI and part C programs, EIdirect service providers with coreknowledge and skills serving chil-dren who are D/HH from birth toage 3, parents/caregivers with chil-dren who are D/HH, and adults whoare D/HH with a background in a re-lated area.

3. Provide the resources needed forprofessionals to obtain the coreknowledge and skills to serve chil-

dren who are D/HH from birth toage 3 and their families.

4. Following the approved guidelines,identify the number and percentageof EI providers who have the appro-priate core knowledge and skillsand who are currently providingservices to families with infants/children who are D/HH. Considerrecruiting experienced professio-nals to mentor others (eg, via dis-tance technology or onsite visits).

5. Identify the number and percentageof EI providers who do not meet thequalifications required but partici-pate in professional developmentactivities specific to EI services andchildren who are D/HH each year.

6. Regularly monitor progress towardthis goal by annually identifying thenumber of families who are receiv-ing EI services from professionalswith core knowledge and skills asdetermined by the state-developedqualification system.

Goal 3a: Intervention Services toTeach ASL Will Be Provided byProfessionals Who Have Native orFluent Skills and Are Trained toTeach Parents/Families and YoungChildren

Rationale

A system of highly qualified EI serviceproviders must be available for all fa-milies across the spectrum of commu-nication choices. An area that has beenparticularly deficient for families whochoose ASL is access to an EI providerwho is a fluent/native ASL signer*.39,40

Families with children who are D/HH inthe process of learning ASL requireaccess to competent and fluent lan-guage models. In EI systems,

*Similarly, for families who choose cued speech ora manual code of English, professionals should befluent models of those systems and skilled inenhancing both auditory and visual communication.




competency and fluency are not ensuredamong EI providers. To establish thebasic grammatical foundations of visuallanguage learning for a newborn infantwho is D/HH, access to competent andfluent language models is vital.41,42

However, although fluency of the lan-guage model is necessary, it is notsufficient to make a professional quali-fied to provide EI services. Families withchildren who are newly identified alsoneed information and resources from EIprofessionals on how to provide anenriched language environment thatsupports their child’s early languagelearning. As an example, the SKI-HI In-stitute Deaf Mentor program is a modelthat can provide resources and trainingfor people who are D/HH to supporta family’s learning of ASL. The familiescan be given resources and support inacquiring ASL through collaborationwith professionals who are D/HH andwho communicate in ASL. In SKI-HI’sDeaf Mentor program, adults who areD/HH are role models for the youngchild and family members. The childand the family learn ASL and are in-troduced to various deaf culture events.The SKI-HI Institute conducted a 3-yearstudy entitled “The Deaf Mentor Experi-mental Project for Young Children WhoAre Deaf and Their Families,” and foundthat children of hearing parents whoare exposed to a bilingual and culturallycompetent environment through DeafMentor services have positive out-comes. Not only did the children havea beginning knowledge and use of ASLbut they were also developing Englishskills at a faster rate than children whodid not receive Deaf Mentor servicesand received services solely from a SKI-HI parent advisor.40

Recommendations

1. Ensure that families have completeand accurate information about ASL.

2. Identify collaborative partners whocan assist in the development of st-atewide systems capable of providing

competent sign language instructionto families and their infants/children.Partners may include EHDI systems,EI professionals with skills in teach-ing families with infants/toddlerswho are D/HH, and individuals whoare D/HH with fluent/native ASL skillsand experience in teaching families/parents of infants. Agencies that cansupport development of a statewidesystem may include schools for thedeaf, local education agencies, statecoordinators of services for studentswho are D/HH, the Registry of Inter-preters for the Deaf, the ASLTeachersAssociation, the American Society forDeaf Children, the State Associationof the Deaf, the National Associationof the Deaf, and the Diagnostic Cen-ter at Boys Town National ResearchHospital for use and implementationof the Educational Interpreter Perfor-mance Assessment.43

3. Establish a representative commit-tee that develops guidelines relatedto the qualifications of sign lan-guage instructors. Committeesshould include specialists in EI strat-egies for parent/family educationand individuals who are D/HH withfluent/native skills and experience inteaching families/parents of infants.

4. Conduct a needs assessment todetermine (1) the number of avail-able sign language instructors withthe qualifications in sign languageand family/infant education and (2)available funding sources.

5. Develop systems that ensure thatneither geographic location nor so-cioeconomic status limits access tocompetent and skilled sign lan-guage instructors. State systemsshould consider utilization of alltechnology, including computerand videophones, to support teach-ing families.

6. Establish and conduct training forASL instructors that includes strat-egies and techniques for teaching

sign language to families of infantsand toddlers.

7. Establish a quality assurance pro-gram for ASL instructors of parents/families. The program should (1) as-sess their fluency in and knowledgeof ASL (existing models for such as-sessment include the ASL TeachersAssociation, the Registry of Inter-preters for the Deaf, and the ASLProficiency Interview) and (2) de-termine their ability to tailor theinstruction so that families areprepared to communicate withinfants and very young children.

8. Conduct a needs assessment to de-termine the number of professio-nals (compensated or volunteer)with the qualifications and skills re-quired to serve as an ASL instructorfor families/parents of infants.

9. Ensure that ASL instructors can ac-cept, without judgment, a family’suse of their sign language skillswith or without spoken language.

Goal 3b: Intervention Services toDevelop Listening and SpokenLanguage Will Be Provided byProfessionals Who Have SpecializedSkills and Knowledge

Rationale

The development of listening andspoken language skills is now attain-able for the vast majority of infants/children who are D/HH (without se-vere additional disabilities) when theyare identified early and are providedwith early and appropriate EI servicesbeginning with fitting of amplificationthat ensures audibility across thespeech spectrum of the native spokenlanguage.44 The consensus of pro-fessionals who specialize in in-tervention for listening and spokenlanguage for children who are D/HH isthat these skills are frequently notmastered in typical preservice train-ing programs of educators of the deaf,


speech- language pathologists, oraudiologists.32

Competent service delivery systemshave a series of checks and balances,as well as cross-check processes, toensure fidelity of intervention. Forexample, an EI provider should beable to share information regardingthe child’s behavior and response tosound across the speech frequencieswith the child’s audiologist. This in-formation can assist the audiologistin fitting, optimizing, and verifyingthe child’s hearing aids. This systemshould ensure that maximal audibil-ity has been provided to the child,thus offering the child optimal ac-cess to spoken language. In addition,the EI provider should be alert forchanges in the infant/child’s hearingcapabilities, which can occur due topermanent or medically treatable cau-ses. These changes are most likely tobe a progression of the hearing loss,although improvement and fluctuationin hearing sensitivity can also occur. EIspecialists need to be able to in-dividualize services to the child’s cur-rent auditory capabilities with theirtechnology. In addition, the EI providerneeds expertise regarding listeningand spoken language developmentalhierarchies and the ability to use di-agnostic teaching to ensure that theauditory linguistic strategies beingused are the most effective.

Research indicates that there are sen-sitive periods for the development ofauditory skills and spoken language;specifically, the first 5 years of a child’slife are critical for development inthese areas,10,45,46 To optimize this shorttime period in a child’s life, families andinfants/children who are D/HH requirethe highest level of provider skills atthe very beginning of the child’s life.

Unfortunately, most EI systems cur-rently provide limited access to profes-sionals with expertise in listening andspoken language and do not collect

system-wide outcome data on children’sdevelopment of listening and spokenlanguage skills.47 Such data are es-sential to ensure that families andchildren have received high-qualityintervention with targeted outcomes.Many EI systems do not offer profes-sional development opportunities toensure continuous improvement forthe EI providers, nor do they offerconsultation/mentorship and/or directobservation to guarantee fidelity of theintervention implementation. These arecritical areas of need if best practicesin listening and spoken language areto be established.

Recommendations

1. Ensure that families have completeand accurate information about lis-tening and spoken language devel-opment.

2. Identify collaborative partners whocan assist in the development ofstatewide systems capable of pro-viding competent listening andspoken language instruction tofamilies and their infants/children.

3. Establish qualifications of EI serviceproviders with the core knowledgeand skills to develop listening andspoken language (Appendix 2).48

4. Conduct a needs assessment to de-termine the number of available EIproviders with the qualificationsand skills required for developinglistening and spoken language withinfants who are D/HH.

5. Develop systems and ensure thatneither geographic location nor so-cioeconomic status limits access tocompetent EI providers with knowl-edge and skills in developing lis-tening and spoken language. Statesystems should consider utilizationof all technology, including com-puter and videophones, to supportteaching families.

6. Establish and conduct training forEI providers to increase their skills

in providing listening and spokenlanguage development.

7. Establish an evaluation of the skillsand knowledge of EI providers intheir delivery services for listeningand spoken language.

8. Ensure that the EI providers havebeen observed sufficiently, havebeen provided with feedback, andhave demonstrated skills in the pro-vision of listening and spoken lan-guage interventions for familieswith infants/children who are D/HH.

9. Ensure that EI providers can accept,without judgment, the family’s use ofthe listening and spoken languageskills they have learned with or with-out the use of sign language or anyother visual communication system.

Goal 4: All Children Who Are D/HHWith Additional Disabilities andTheir Families Have Access toSpecialists Who Have theProfessional Qualifications andSpecialized Knowledge and Skills toSupport and Promote OptimalDevelopmental Outcomes

Rationale

It is estimated from previous studiesthat 35% to 40% of all children who areD/HH have disabilities in addition todeafness.10,49 These additional dis-abilities often affect the child’s abilityto access and use language. Very littleempirical information is availableabout development in the first 6 yearsof life for children who are D/HH withadditional disabilities. However, ap-propriate EI services should result insimilar advantages for children whoare D/HH with additional disabilitiesas for children who are D/HH only.10,13,50

Children who are D/HH, were identifiedbefore 6 months of age, and hadcognitive skills ranging from quotientsof 20 to 80, demonstrated significantlybetter language scores than didlater-identified children with multipledisabilities in the first 3 to 5 years of




life when they were early-identified andreceived timely EI services.10,50

For some children who are D/HH andhave additional disabilities, it may bedetermined that hearing loss is notthe primary disability. Regardless ofthe primary disability, however, it iscritical to recognize the primacy ofcommunication for learning and theimpact of communicative delays onother developmental domains. There-fore, the team of professionals servingthe child must include specialized ex-pertise in meeting the communicationaccess needs of the child.

EI specialists serving children who areD/HH with additional disabilitiesshould be able to

� monitor developmental needs andoutcomes across domains with ap-propriate assessments;

� recognize developmental concernsand involve a team of evaluatorsbefore attempting to design an in-tervention program;

� work as an effective and integratedmember of a transdisciplinary team,in a manner that optimizes childand family learning;

� modify developmental strategies toaccommodate the child’s specialneeds;

� advocate for and facilitate theparent/family understanding ofmedical, developmental, pediatric,and other specialty reports andtheir implications for the child‘slearning;

� collaborate with the managing au-diologist to adapt assessment andamplification approaches to accom-modate the child’s special needs;

� recognize the child’s needs andmake referrals for specialty evalu-ations (eg, feeding and swallowing,oral motor, etc);

� assist families in prioritizing needsto optimize the level of service de-livery at various ages;

� adapt EI strategies to appropri-ately accommodate disabilities inother developmental domains andto reinforce goals of other spe-cialty providers on the team;

� use augmentative communicationdevices and strategies, includingindividualized evaluation and imple-mentation;

� manage mobilization devices andother supportive equipment neededby the child.

Recommendations

1. Develop and implement a datamanagement system capable ofreporting the number and per-centage of children who are D/HH with additional diagnosed dis-abilities, including the following:visual, intellectual, or emotional/behavioral disability; fine andgross motor delays with or withoutcerebral palsy; autism spectrumdisorder; sensory processing dis-order; and craniofacial or neuro-degenerative disorders or brainmalformations.

2. Develop a system with the abilityto track children who are D/HHwith additional disabilities re-gardless of the primary disabilityof the child, identifying the indi-vidual or agency that can and willassume responsibility for track-ing these children (eg, EHDI orpart C, public school programs,or schools for the deaf).

3. Ensure that the developmentalmonitoring protocol is adaptiveand sensitive to any restrictionsin performance that are due tothe additional disability and thatwould significantly underestimatethe abilities and skills of the child.

4. Implement models of transdisci-plinary services, making certainthat families who have childrenwith multiple disabilities have access

to EI services that meet the needs ofthe child and family in all develop-mental domains.

Goal 5: All Children Who Are D/HHand Their Families From CulturallyDiverse Backgrounds and/or FromNon–English-Speaking Homes HaveAccess to Culturally CompetentServices With Provision of theSame Quality and Quantity ofInformation Given to Families Fromthe Majority Culture

Rationale

The number of culturally and linguis-tically diverse children who are D/HHin the United States and its territo-ries is continually rising. In somemajor urban areas, and in somestates, the number of culturally di-verse occupants is now the majority.There is a rapid and growing pop-ulation of children who are D/HH livingin homes in which the primary lan-guage is not English. Families who useASL as the language of communicationwithin the home are also a culturallyand linguistically diverse population.An additional aspect of diversity is thesignificant portion of families whohave limited levels of literacy, parentaleducation, and/or family income.These families are at high risk offailure to access and benefit fromtraditional educational services. How-ever, research within the United Stateshas revealed that it is possible todeliver EI services that result in ap-propriate development of children offamilies from culturally diverse back-grounds.10,17,50

It is important that the informationprovided to families is of the samequality and quantity provided to nativeEnglish speakers and that it is de-livered in a manner that is accessibleto the families. Even when culturallydiverse families are able to commu-nicate successfully in spoken Englishor ASL, they may have values and


beliefs that affect their understandingand acceptance of information con-veyed in EI. These values and beliefsmay also affect their ability or will-ingness to follow through on recom-mendations. Therefore, it is essentialthat the manner in which informationis delivered is respectful of the beliefsand values of the families and theircountries of origin.51,52

Spoken languages throughout theworld have differences in phonology,semantics, syntax/grammar, and prag-matics. For a child to successfully de-velop spoken language skills in anylanguage, he or she must have accessto high-quality instruction in that lan-guage.53–55 Thus, EI providers need tolearn to adapt auditory skill develop-ment strategies for the teaching ofspoken English, to the acoustic char-acteristics of the family’s native lan-guage if the family chooses a spokenlanguage approach.

Like spoken languages, visual languagesystems are unique and differ aroundthe world. However, unlike spoken lan-guage, many families are not knowl-edgeable about their native signedlanguages, and therefore introductionof ASL or other visual systems used inthe United States is often appropriatewhen chosen by the family.

Recommendations

1. Identify the number of families whospeak or sign a language otherthan English in the home and thepercentage of families using non-English languages by native lan-guage.

2. Identify the number of families whospeak English and are culturally di-verse, including the areas of cul-tural diversity (African American,Hispanic/Latino, Asian American orSouth Pacific Islander, or AmericanIndian/Native American).

3. Develop a plan for ensuring accessto information for families whose

native language is not English thatis comparable to information pro-vided to native English-speakingfamilies by providing resources inthe family’s home language or lan-guages. Steps should include thefollowing:

� Identify the number of EI pro-viders capable of providing EIservices directly in a languageother than English.

� Identify the number of familiesreceiving services that includeregular and trained inter-preters (knowledgeable aboutthe parent-infant curriculum).

� Develop materials that areavailable in the home languageor languages of the child orthat can be adapted (not justtranslated from one languageto another) to the particularculture and language of thefamily.

4. Ensure that families from diversecultures participate in and feelcomfortable giving feedback aboutservices received, by providing di-verse communication mechanismsincluding face-to-face feedback orsurveys in the home language orlanguages), “buddy systems” andpeer mentors from culturally di-verse groups, community leaderswho can serve as cultural brokersand advisers, and consistent inter-preters who are trained in the EIcurricula specific to families withchildren who are D/HH.

5. Develop professional in-servicetraining that includes informationabout providing services to fami-lies who do not speak English. Thistraining should include such topicsas cultural differences in attitudesand beliefs about disability, behav-iors that may be considered offen-sive by other cultures, avoidance ofcultural stereotypes, and different

cultural expectations of medical,allied health, and educational pro-fessionals. Training should also in-clude beliefs about being D/HH notas a disability but as a cultural andlinguistic difference.

6. Monitor the developmental prog-ress of children who are acquiringlanguages other than spoken En-glish. For some of the more com-mon languages, such as Spanish,there are a few developmentalinstruments that can be used. Asdevelopmental assessments be-come available in other languages,they should be incorporated into EIprograms to assist families inmonitoring their child’s progressand determining whether thechoices made are facilitating suc-cess in communication for theirchild who is D/HH (see www.sci.sdsu.edu/cdi/adaptations_ol.htm forthe MacArthur-Bates CommunicativeDevelopment Inventories in otherlanguages).

Goal 6: All Children Who Are D/HHShould Have Their ProgressMonitored Every 6 Months FromBirth to 36 Months of Age, Througha Protocol That Includes the Use ofStandardized, Norm-ReferencedDevelopmental Evaluations, forLanguage (Spoken and/or Signed),the Modality of Communication(Auditory, Visual, and/orAugmentative), Social-Emotional,Cognitive, and Fine and GrossMotor Skills

Rationale

The current IDEA part C developmentalassessment of children with dis-abilities is designed to demonstratethat EI services remediate devel-opmental delay for infants/toddlersand children with disabilities. In con-trast, EHDI systems have been estab-lished for the prevention or ameliorationof the developmental delays often




www.sci.sdsu.edu/cdi/adaptations_ol.htm

www.sci.sdsu.edu/cdi/adaptations_ol.htm

associated with children who are D/HH. Thus, developmental assessmentfor this population is designed to en-sure that the children are masteringthe developmental skills appropriatefor their age and cognitive functioning.Earlier identification of children whoare D/HH has been established withthe goal of prevention of delay, notremediation of delay.

The urgency of providing appropriateEI services is supported by evidence ofreduced and limited success of EIstrategies that are initiated after thesensitive period for language andauditory development.8,10 The goal ofEI services for infants/children whoare D/HH is to provide sufficient sup-port to ensure that the child makesappropriate progress toward expec-ted developmental objectives. The bestopportunity to accomplish this goal isthe prevention of developmental dis-ability. Therefore, progress monitoringshould be done with instruments thatare norm-referenced. Assessmenttools should be appropriate for thelanguage and communication systemused by the child.

Monitoring of developmental prog-ress provides parents/families and EIproviders objective data about theindividual rate of their child’s de-velopment and can guide their de-cision making. In addition, systematicmonitoring of developmental progresshas the potential to provide states/territories, local educational agen-cies, and individual early childhoodprograms with information that canguide system change and continuousimprovement by identifying strengthsand weaknesses within their system.

Recommendations

1. Monitor the developmental prog-ress of all infants identified throughuniversal newborn hearing screen-ing (UNHS) on a consistent sched-ule, every 6 months through 36

months and annually thereafter, toensure that children are making ap-propriate progress in the followingareas:

� language and social-emotionaldevelopment commensurate withor within 1 SD of their chrono-logical age or cognitive develop-ment;

� auditory, listening, vocal, andspeech development leading tointelligible and age-appropriatespoken language, if chosen bythe family;

� signing, both expressivity andreceptivity, leading to appropri-ate language development, ifchosen by the family;

� fine and gross motor develop-ment, visual and auditory percep-tion, and measures of adaptivebehavior;

� analysis of developmental growthover time: (1) development overtime can only be analyzed if thechild is assessed with at leastsome instruments that can be re-peated throughout the target agerange; (2) if the child’s progressin the above domains does notmeet expectations, or if criticalvariables have changed over thecourse of the time of monitoring,appropriate adaptations to EIservices should be made;

� analysis of the quality of the sys-tem using progress monitoring:(1) progress monitoring shouldalso be used to assess the qual-ity of the system; (2) states andterritories should develop guide-lines for determining whetherthe quality, frequency, and inten-sity of service is sufficient foradequate progress for an indi-vidual child on the basis of hisor her progress monitoring.

2. Develop a statewide standard as-sessment protocol used with all

children who are D/HH to providethe state/territory with an oppor-tunity to do quality assurance ofcomponents of their EI system.States could develop a standardassessment battery in collaborationwith experts in their state and ei-ther directly implement the batteryor ensure that it is implemented(eg, in collaboration with a univer-sity, research entity, or other pro-gram capable of collecting andanalyzing statewide assessmentdata for children who are D/HH).This information can then be usedto improve the skills of the pro-viders and the characteristics of in-tervention.

3. Develop a collaborative sharingnetwork capable of collecting de-velopmental data for progressmonitoring at regular intervals in-cluding data reporting to the EHDIdatabase.

Goal 7: All Children Who AreIdentified With Hearing Loss of AnyDegree, Including Those WithUnilateral or Slight Hearing Loss,Those With Auditory Neural HearingLoss (Auditory Neuropathy), andThose With Progressive orFluctuating Hearing Loss, ReceiveAppropriate Monitoring andImmediate Follow-up InterventionServices Where Appropriate

Rationale

Children with hearing loss are at riskof academic failure (math and read-ing), delayed language development,progression (worsening) of hearingloss, and/or psychosocial delays. Thisfinding has been revealed in a numberof studies over the past 35 years, inpopulations having all types anddegrees of hearing loss.56–65 Childrenwho are diagnosed as having unilat-eral hearing loss may experience on-set and progression of hearing loss inthe formerly normal hearing ear.62,66


Children with relatively lesser degreesof hearing loss may experience fluctu-ation/progression into the more severeranges (Yoshinaga-Itano C, unpublisheddata, 2011). Children with auditoryneural hearing loss (auditory neurop-athy spectrum disorder) have beenfound to have significant delays incommunication, speech, spoken andvisual language, psychosocial skills,and literacy development. In general,their developmental profiles are similarto children with sensory deafness.67–69

Very little is known about the de-velopmental outcomes of children withpermanent sensorineural hearing losswho experience fluctuation due toconductive hearing losses. Childrenwith hearing loss are at an increasedrisk of increased hearing loss in thepresence of otitis media as comparedwith children with normal hearingbecause of the number of childrenwith hearing loss and craniofacialanomalies or syndromes such as Downsyndrome. Appropriate amplificationfitting and audiologic monitoring arerequired for these children to main-tain optimal developmental progress.

Consistent and frequent audiologicmonitoring is important for all chil-dren who are D/HH, with any type ofhearing loss. However, the audiologicand medical follow-up of the childrenin the audiologic categories covered ingoal 7 are frequently initiated by the EIservice provider who, in conjunctionwith the parent or parents/family,notices changes in the child‘s audi-tory behavior and speech/spokenlanguage development. It is hopedthat more frequent audiologic moni-toring of these children will result inan earlier identification of issues suchas progression, improvement, orfluctuation. EI providers need to es-tablish close collaboration withaudiologists to effectively managethese children. This need for collabo-ration is especially the case when the

EI providers do not have specializedknowledge about the auditory skillsand spoken language development ofchildren with all types and degrees ofhearing loss.

Recommendations for Monitoring

1. Refer all children with unilateralor bilateral hearing loss to EI forevaluation and consideration ofenrollment. If the child does notqualify for state EI services, en-sure that families are providedwith access to information andcounseling regarding their child’shearing loss and the potential im-pact of hearing loss on the child’sdaily life and communication de-velopment.

2. Develop follow-up mechanismsfor ongoing monitoring of hear-ing, speech/language, and com-munication for all children withhearing levels that fall outsidethe range of normal in one orboth ears, regardless of the etiol-ogy of the hearing loss. This mon-itoring should include follow-upmechanisms for children withchronic, nonpermanent conduc-tive hearing losses.

3. Monitor communication develop-ment (receptive and expressive lan-guage, speech, and auditory skills)through appropriate developmen-tal screening protocols every 6months in the infant/toddler periodand every 12 months thereafter.

4. Identify the agency or profes-sional responsible for surveil-lance and make sure thatsurveillance occurs (eg, eitherthrough the medical home ormanaging physician, the audiolo-gist, part C, or a referral back tothe EHDI system).

5. Determine and designate a provideror system (eg, part C, EHDI, pri-mary care physician, parent/family)

that ensures that developmentalscreening of communication, audi-ologic monitoring, tracking, andsurveillance occurs, especially if thechild has been deemed ineligiblefor EI services through the statepart C system.

6. Develop and disseminate informa-tion about the use of amplificationfor children with hearing lossprepared by consulting audiolo-gists with expertise with infants/children.

7. Provide families with an opportu-nity for access to visual commu-nication, which may include signlanguage systems, in addition tolistening and spoken language,particularly in light of thepossibility/probability of progres-sive hearing loss.

8. Ensure that a child with a conduc-tive hearing loss that has per-sisted in the first few months oflife and remains for 6 months willbe referred to EI services and oto-logic specialty care to make surethat adequate auditory access isavailable to the child.

9. Consider amplification, if thehearing loss has remained for 6months even if it is temporary, toaccomplish this auditory access.This group also includes childrenwith cleft palate or Down syn-drome, who are at very high riskfor chronic fluctuating middle eareffusion.70–72

10. Surveillance should includeparent/family counseling andevaluation by a speech-languagepathologist to monitor progressin speech and language acquisition.

11. Limited research suggests thatchildren with minimal/mild bilat-eral hearing loss may not wearhearing aids either because (1)the children reject the amplifica-tion, (2) the parents/family are




unable to promote consistent ampli-fication usage, or (3) the parents/family are themselves not convincedof the benefit of amplification.63

12. Provide educational informationto parents/family covering the fol-lowing topics:

� impact of hearing loss on thedaily life of the child includingcommunication challenges innoisy environments, the diffi-culty of incidental learning,and the possibility of language/communication delays;

� importance of hearing protec-tion;

� impact of chronic otitis mediaon residual hearing, and theimportance of audiologic andotologic monitoring of hearingstatus every 3 to 6 months;

� importance of monitoring thecommunication and social-emotional development of thechild;

� availability of EI services (toprevent delay instead of habili-tation after delay is identified);

� pros and cons of all amplifica-tion options including cochlearimplants;

� language options includingvisual and spoken languages,benefits of multisensory inputof language, and the need forongoing comprehensive evalu-ation of communication;

� possibility of progression orfluctuation of hearing loss andimportance of surveillance byaudiology and the medical home;

� importance of medical, genetic,ophthalmologic, and cardiac(EKG) evaluations on childrenwith any type and degree ofhearing loss;

� importance of reassessmentof treatment/intervention plans

regularly to consider progressin language and communica-tion acquisition, changes inhearing status, changes inamplification choices, and/orchanges in communicationmodes/methods.

13. Encourage primary care physiciansto recognize the need for ongoingaudiologic surveillance in all chil-dren, particularly those withrisk factors for delayed-onset/progressive hearing loss, or thosechildren whose hearing loss is al-ready being treated with hearingaid amplification. This surveillanceshould include developmental checksconsistent with the AmericanAcademy of Pediatrics PeriodicitySchedule, or more frequently if con-cerns are raised regarding hearingor development.

Goal 8: Families Will Be ActiveParticipants in the Developmentand Implementation of EHDISystems at the State/Territory andLocal Levels

Rationale

Equitable partnerships between fami-lies and EI programs and systems arecritical to the success of EHDI pro-grams and the achievement of optimaloutcomes for children. Family leader-ship and involvement are critical whendeveloping policies and programs toensure that the systems of care sup-port a genuine reflection of the day-to-day challenges and opportunitiesfacing families.1

� Qualified parent/family leaders areappropriately trained on such topicsas advocacy, systems building,parent/family/professional partner-ships, theories of adult learningstyles, and family-to-family support.

� Parent/family leaders contribute tothe EHDI system by exhibiting theelements of collaboration, that is,

mutual respect for skills andknowledge, honest and clear com-munication, understanding andempathy, mutually agreed-upongoals, shared planning and decisionmaking, open sharing of informa-tion, accessibility and responsive-ness, negotiation and conflictresolution skills, and joint evalua-tion of progress.

� Parent/family leaders have the ca-pacity to look beyond their ownpersonal experiences/beliefs torepresent and support a broadcommunity of families.

Recommendations

1. Develop or revise policies and legis-lation related to EHDI programs thatrequire the meaningful inclusion ofqualified families as active partici-pants in the development and imple-mentation of EHDI systems.

2. Report the number of professionalfamily positions (ie, compensatedrather than volunteer) and demon-strate how parents and families areinvolved in recruitment processes.

3. Provide resources (professionaldevelopment training and mentor-ship) for families to obtain the nec-essary knowledge and skills toparticipate in systems and policydevelopment and demonstrate thattraining is provided.

Goal 9: All Families Will Have Accessto Other Families Who HaveChildren Who Are D/HH and WhoAre Appropriately Trained toProvide Culturally andLinguistically Sensitive Support,Mentorship, and Guidance

Rationale

Given the low incidence of childrenwho are D/HH, families often feelisolated and do not typically havesupport opportunities in their es-tablished communities. Being deaf


or hard of hearing impacts the childas well as the parents, siblings, ex-tended family, and community. No oneunderstands this as well as otherfamilies with children who are D/HH.Families report that there is some-thing unique and important in re-ceiving support from other parentsand families who have children whoare D/HH and who have “been there.”There is a sense of an equitable re-lationship between the experiencedparent and the referred parent thatcannot be duplicated through otherdynamics.73

Opportunities for families to commu-nicate with one another, chat online,and attend support groups or otheractivities designed for communicatingwith other parents and families area valuable component of the circle ofsupport. National organizations suchas the Alexander Graham Bell Associ-ation for the Deaf and Hard of Hearing,the American Society for Deaf Children,Family Voices, and Hands & Voices(and the Hands & Voices “Guide byYour Side” program) have models forproviding family-to-family support.Support models range from formal-ized programs in which trainedparents/families provide systematic,knowledgeable support to the in-formal matching of families in a givencommunity by professionals whoknow other families with a similarstory.

Families rank family-to-family supportas one of the most helpful forms ofsupport for the family.27,74 Parents/families reporting participation insocial networks with other parents/families of D/HH children had lessisolation, greater acceptance of theirchild, and improved interactionalresponsivity.75

Recommendations

1. Develop and implement guide-lines that address family-to-family

support. These guidelines shouldoutline the background and train-ing necessary for family supportproviders to interact with familiesof infants/children newly identifiedas D/HH, including the importanceof objective, unbiased information.

2. Provide the necessary training forfamilies/parents who participate infamily-to-family support sessionsand activities.

3. Identify collaborative channels tocreate sustainable and compensatedfamily-to-family support services.

4. Report the number and percentageof families who have had access toappropriate family-to-family sup-ports.

Goal 10: Individuals Who Are D/HHWill Be Active Participants in theDevelopment and Implementationof EHDI Systems at the National,State/Territory, and Local Levels;Their Participation Will Be anExpected and Integral Componentof the EHDI Systems

Rationale

Adults who are D/HH comprise a het-erogeneous group of individuals witha wide range of communication expe-riences, careers, life perspectives, andeducational backgrounds. Barriersto their inclusion in EHDI systemscan be overcome when professionalsacknowledge, understand, and valuethe importance of providing childrenwho are D/HH and their familiesthe opportunity to meet with adultswho can share their experiencesbeing D/HH.

The goal is to have individuals who areD/HH woven into the fabric of EHDIsystems at every level. Individuals whoare D/HH know what works to meettheir language and communicationneeds in a way that people who arehearing cannot. Because the supportof language and communication of

infants is intended to be the heart ofEHDI systems, it is critical to include D/HH adults in these systems.

Currently, few EHDI systems include D/HH adults in a meaningful way. Thesystem should have diverse repre-sentation at many levels. D/HH personswith appropriate qualifications shouldbe included, for example, as EHDIdirectors, EHDI advisory panel chairsand members, administrators, part Cservice coordinators, audiologists,speech-language pathologists, pedia-tricians, counselors, mentors, ASLteachers, EI service providers, andeducators of the deaf and in otherroles. To achieve these goals, EHDIsystems should partner with national,state, and local organizations thatsupport D/HH persons.

Recommendations

1. Develop or revise policies and leg-islation related to EHDI programsto require inclusion of individualswho are D/HH and who representa diverse range of communication,educational, amplification technol-ogy, and life experiences as activeparticipants in the developmentand implementation of EHDI sys-tems (eg, involvement of such indi-viduals in systems will be evidentin recruitment processes and inthe number of compensated, ratherthan volunteer, positions filled byindividuals who are D/HH).

2. Implement professional developmenttraining and mentoring systems andprovide the resources needed forindividuals who are D/HH to obtainthe necessary knowledge and skillsto participate in systems and policydevelopment.

3. Report the number of professionalpositions (eg, compensated andvolunteer) filled by individualswho are D/HH at all levels of theEHDI system.




Goal 11: All Children Who Are D/HHand Their Families Have Access toSupport, Mentorship, andGuidance From IndividualsWho Are D/HH

Rationale

Research has revealed the benefitsof providing children who are D/HHand their families connections tomembers of the D/HH community.Families who have many contactswith adults who are D/HH exhibita strong sense of competence withregard to raising their child who isD/HH.75 When there are no otherD/HH members in the family, parentsidentify deaf individuals as one ofthe most important sources of sup-port in addition to teachers, thera-pists, other parents, and spouses.76

Community members who are deafare able to provide children who areD/HH with unique perspectives thatparents who are hearing cannot.77

The more interactions that familieshave with adults who are D/HH, thebetter they may envision their ownchild’s future, including developinggoals and dreams that are not limitedby misunderstandings about the livesof people who are D/HH. The goal ofthe system is to value infants/childrenwho are D/HH for who they are.

Starting at the time the language andcommunication decision-making pro-cess begins, programs such as D/HHConnections in Colorado† involvedeaf individuals in guiding, support-ing, serving as role models, andinteracting with the child who is D/HHand his or her family. These individu-als may share personal experiencesor information about being D/HH, ed-ucational and communication oppor-tunities, using hearing technology, or

about the deaf community and deafculture. They are available to go intothe home, ideally working in closecoordination with other EI serviceproviders. They may assist families inmeeting IFSP goals. Providing familieswho are hearing with opportunities tolearn more about being D/HH reducesfamily stress and promotes familysupport of the child.78,79

Recommendations

1. Establish an advisory group com-posed of a critical mass of mem-bers who are D/HH, especiallythose with experience with EI serv-ices and programs, along with rep-resentatives from the state EHDIsystem and EI providers with ex-pertise and skill in providing serv-ices to families of infants andtoddlers who are D/HH who will

� collaboratively identify potentialfunding mechanisms for sustain-able support services to familiesfrom individuals who are D/HH;

� develop and implement guide-lines that address providingfamilies with access to D/HHindividuals who can provide fam-ily support (these guidelinesshould outline the backgroundand training necessary for sup-port personnel/role models whoare themselves D/HH to interactwith families of infants/childrennewly identified as D/HH; thesesystems should guarantee thatfamilies have access to the ser-vices regardless of audiologicstatus (hearing levels or type)and the geographic location ofthe family);

� develop a leadership trainingprotocol/curriculum for role mod-els and provide leadership train-ing for identified role models;

� develop and implement a men-toring and monitoring systemfor role models.

2. Make sure that the individuals whoare D/HH represent the diversity ofthe EHDI population (eg, deaf culture,hard of hearing, cochlear implantand hearing aid users, unilateralhearing loss, auditory neural hear-ing loss, cultural diversity).

Goal 12: As Best Practices AreIncreasingly Identified andImplemented, All Children Who AreD/HH and Their Families Will BeEnsured of Fidelity in theImplementation of the InterventionThey Receive

Rationale

Fidelity of intervention refers to as-surance that the intervention providedto the family and child is sufficient to(1) promote a good quality of life forthe family and the child; (2) providestrategies for the development ofspoken, signed/visual, or multimodallanguage that are appropriate to thefamily’s choices and the cognitiveability and age of the child; and (3)provide strategies that optimize audi-tory skill development with the fam-ily’s chosen technology.

High fidelity of the implementation ofintervention requires (1) knowledge ofintervention theory and methods, (2)well-defined interventions based ontheory and methods, (3) demonstra-tion of intervention procedures, (4)supervised practice, (5) feedback onperformance, and (6) data to demon-strate that the intervention strategiesresult in the desired goals.

Ensuring fidelity of implementationincludes the following character-istics: (1) linking interventions toimproved outcomes (credibility); (2)definitively describing operations,techniques, and components; (3)clearly defining responsibilities ofspecific persons; (4) creating a datasystem for measuring operations,techniques, and components; (5) cre-ating a system for feedback and

†Although the writers are aware of other statesinvolving deaf community members in similarways, it is not clear if they are integrated ina formal way in EI and EHDI systems. For thisreason, the Colorado program is described.


decision making (formative); and (6)creating accountability measures fornoncompliance.80

Historically, EI providers have not de-veloped systems and programs thatdocument the fidelity of the interventionprovided to families and children. Aquality EI program should have a pro-cess for continuous improvement.Therefore, it is important to establisha means of assessing and monitoringthe fidelity of intervention services. Thisinformation is key to establishing anempirical evidence base for EI. Withoutdocumentation of fidelity, it is difficult tolink effective interventions with suc-cessful outcomes.

EI for families and infants/childrenwho are D/HH involves a complex in-teraction of many child, family, back-ground, and intervention factors. Thiscomplexity presents formidable chal-lenges for developing well-definedinterventions, training professionalsin the intervention techniques, andmeasuring the fidelity of these inter-ventions. In essence, little progresshas been made. Clear delineation ofsuccessful interventions is necessaryto ensure replicability. However, ac-knowledging that we are in the infantstages of defining and measuringfidelity of intervention, it is critical thatthe first steps be taken.

No literature currently exists that linksthe fidelity of the implementation ofintervention for children who are D/HHwith successful outcomes. However,the extant literature reveals that as-surance of the fidelity of the imple-mentation of interventions is the key tosuccessful outcomes for children inspecial education and for medicalinterventions for both children andadults.80–85 In these studies, positivestudent outcomes were attributed to 3related factors: fidelity of imple-mentation of the process, degree towhich the selected interventions wereempirically supported, and the fidelity

of intervention implementation (at theteacher level).

Recommendations

1. Develop and advance mechanismsand systems to assess and monitorthe fidelity of the EI services re-ceived by families who haveinfants/children who are D/HH.Having developed, approved, andimplemented standards for theknowledge and skills needed byproviders of EI services to familiesand children who are D/HH (seeAppendix 1) is necessary. Similarly,mechanisms to measure the appli-cation of these skills in interventionare required. The most effectivemeans of monitoring the fidelity ofintervention is through direct ob-servation and ongoing mentorship.

2. Identify a critical core group ofexperts. Trainer-of-trainer and peermentoring models can providea system for EI providers to receivesupport from professionals withthe greatest experience, knowl-edge, and skills.

3. Monitor the fidelity of interventionthrough direct observation bya highly qualified, experienced EIprovider/supervisor. A program ofmentorship should be developedwith an expert through consulta-tion with individual EI providers.Tele-education/health technology canbe used for this purpose. Laptopcomputers with voice and videocommunication technology (eg, dis-tance technology) can also provideexpert observation and real-timementoring.

4. Provide mentorship through inputon lesson goals and planning.

5. Encourage and support profes-sional development of EI providers.

6. Conduct self-assessments of EIproviders to identify their percep-tions of strengths and weak-nesses related to the guidelines

established in goal 3 (see App-endixes 2 and 3). The goal ofthese self-evaluation instruments ofEI providers is to identify perceivedprogrammatic strengths and weak-nesses and provide professional de-velopment in the areas of perceivedweakness.

7. Measure the progress of EI pro-viders on their knowledge andskills at regular intervals.86 Referto Gresham et al80 for informationabout how to monitor the quality ofinterventions.

8. Obtain families’ input about theskills that they have learnedthrough EI services and their per-ceptions about the effectiveness ofthese skills in promoting success-ful outcomes for their children.Questions should not be about fam-ilies’ satisfaction but about infor-mation they have learned throughEI services.87

GUIDELINES AND BENCHMARKS

We recommend collecting data on eachof the following recommended guide-lines. Our benchmark for all of these is≥90% of the children/families in eachstate/territory.

1. All state/territories will have a co-ordinated system of access to EIservices. The system providestimely access to EI professionalswho have the knowledge and skillsnecessary for promoting successfuldevelopmental outcomes for chil-dren who are D/HH and the capa-bility of tracking individual childrenfrom confirmation to developmen-tal outcomes in EI services.

� Children/families are referredto EI services within 48 hoursof confirmation that a child isD/HH.

� IFSPs are completed within 45days of referral from confir-mation that the child is D/HH.




� All states/territories indicatethat they have an annuallyupdated resource manual thatis made available and dissemi-nated to all families with newlyidentified infants/children whoare D/HH. States/territoriesregularly evaluate the compre-hensiveness and quality of theinformation provided in the re-source manual.

2. Children/families have timely ac-cess to service coordinators whohave the core knowledge andskills to fulfill the legal require-ments of part C (helping famil-ies obtain services, coordinatingservices, facilitating the timelydelivery of services, and continu-ously seeking appropriate serv-ices) and the requisite knowledgeand skills unique to working withchildren, from birth to 3 yearsof age, who are D/HH and theirfamilies.

3. All children who are D/HH frombirth to 3 years of age and theirfamilies have EI providers whohave the professional qualifica-tions and core knowledge andskills to optimize their develop-ment and well-being.

� Each state and territory hasa statement of professionalqualifications for providerswithin 2 years of the publica-tion of this document.

� All providers meet the statedprofessional qualifications.

� States and territories havea statement of the systematicprofessional development pro-gram for EI professionals work-ing with families who haveinfants/children who are D/HHwithin 5 years of the publica-tion of this document.

4. Three areas have been identifiedas needing specialized skills in

addition to the general knowledgeand skills required by providers.

� Listening and spoken lan-guage. States and territorieswill adopt a mechanism for en-suring that the professionalsproviding listening and spokenlanguage services have theknowledge and skills that willfacilitate the development ofthese skills for families whochoose these objectives.

� Sign language instructors.States and territories will re-port the percentage of familiesand children who are able toaccess ASL learning opportuni-ties from a skilled, fluent ASLuser. All families who choseASL will have access to trainedand skilled ASL instructorswho use effective ASL learningprograms for families withyoung children who are D/HH.Families who elect to use signsystems or cued speech alsohave access to users with flu-ency.

� Other specialized methods.States and territories will de-velop a mechanism that en-sures intervention providershave the knowledge and skillsto teach integrated systemsof visual communication andlistening/spoken language.

5. States report that they have de-veloped a system ensuring familyparticipation in the developmentand implementation of EHDI poli-cies and procedures.

� All families report that theyhave access to ongoing family-to-family support.

6. States report that they have de-veloped and implemented a sys-tem ensuring participation ofindividuals who are D/HH withrelevant skills and knowledge

in the development and imple-mentation of EHDI policies andprocedures.

� All families report that theyhave access to professionals/individuals in a variety of differ-ent roles who are themselvesD/HH.

7. States/territories develop fidelitymonitoring systems and set thegoal to begin implementationwithin 5 years from the publica-tion of this document.

� Intervention services for fami-lies and children who are D/HHare monitored for fidelity ofimplementation.

8. Children who are D/HH have theirdevelopment monitored annually,allowing the state to determineprogress toward meeting the de-velopmental outcome goals of EHDI.

9. States/territories have a systemfor determining whether EI profes-sionals working with children whoare D/HH with additional disabil-ities have the skills and knowledgenecessary to promote success-ful or optimal/appropriate devel-opmental outcomes for thesechildren and their families. Profes-sionals will receive ongoing in-service education on developmen-tal disabilities (eg, motor, vision,autism, and cognition) and haveaccess to specialists/team mem-bers who are qualified to addressthe specialty areas needed by thechild. IFSPs and individualized edu-cation programs include the inter-disciplinary services necessary toaddress the broad spectrum ofneeds presented by children whoare D/HH and have additional dis-abilities.

10. States/territories will be able to re-port the number and percentage offamilies who have children who areD/HH in nonnative English-speaking


homes and identify the home lan-guage or languages.

11. States and territories havedeveloped protocols of care forfamilies who do not speak Englishand/or are culturally diverse, aswell as a data management sys-tem for monitoring, with a goalof implementation within 5 yearsof the publication of this docu-ment.

CONCLUDING REMARKS

In conclusion, this best practice state-ment has advocated for the imple-mentation of coordinated statewidesystems with the expertise to provideindividualized, high-fidelity EI programsfor children who are D/HH and theirfamilies. Consistent monitoring of childand family outcomes is an essentialstep toward ensuring optimal outcomesfor the majority of children. There isa great need to strengthen the evidencebase supporting specific EI approaches.The establishment of practice standards,implementation of developmentally ap-propriate protocols for monitoring ofoutcomes, and commitment to researchcollaborations are critical steps towardthis goal.

ACKNOWLEDGMENTSThe Early Intervention Supplement tothe Year 2007 Position Statementwas developed by the Joint Committeeon Infant Hearing (JCIH). Joint commit-tee member organizations and theirrespective representatives who pre-pared this statement include (in alpha-betical order): the Alexander GrahamBell Association for the Deaf and Hardof Hearing (Carianne Muse, MPH, andJudy Harrison, MA); the AmericanAcademy of Audiology (ChristineYoshinaga-Itano, PhD [Chair 2010–2012], and Alison Grimes, AuD); theAmerican Academy of Otolaryngology-Head and Neck Surgery (Patrick E.Brookhouser, MD, Stephen Epstein, MD

[Chair 2008–2010], Craig Buchman,MD); the American Academy of Pe-diatrics (Albert Mehl, MD, and BettyVohr, MD); the American Speech-Language-Hearing Association (MaryPat Moeller, PhD, Patti Martin, PhD);the Council on Education of the Deaf,whose member organizations includethe Alexander Graham Bell Associationfor the Deaf and Hard of Hearing, theAmerican Society for Deaf Children,the Association of College Educatorsof the Deaf and Hard of Hearing, theConference of Educational Administra-tors of Schools and Programs for theDeaf, the Convention of AmericanInstructors of the Deaf, and the Na-tional Association of the Deaf (BethS. Benedict, PhD [Chair 2012–2014],Bobbie Scoggins, EdD, Jodee Crace,MA); and the Directors of Speechand Hearing Programs in State Healthand Welfare Agencies (Michelle King,MS, Alice Sette, AuD, Beth Martin, MA).Ex officio contributors to the JCIH in-clude Pamela Mason, MEd (AmericanSpeech-Language-Hearing Association).We also acknowledge the contribu-tion of John Eichwald, MA, and IreneForsman, MS, RN. We thank SophieAmbrose, Karen Clark, Jodee Crace,Brandt Culpepper, Janet des Georges,Carol Flexer, Petra Horn-Marsh, TamiHossler, Gaurav Mather, Jean Moog,Barbara Raimondo, Roz Rosen, MarilynSass-Lehrer, Laurene Simms, andArlene Stredler Brown for their as-sistance.

Joint committee member organiza-tions that adopt this statement include(in alphabetical order): the AlexanderGraham Bell Association for the Deafand Hard of Hearing, the AmericanAcademy of Audiology, the AmericanAcademy of Otolaryngology-Head andNeck Surgery, the American Academyof Pediatrics, the American Speech-Language-Hearing Association, and theCouncil on Education of the Deaf (seeindividual organizations listed above).

APPENDIX 1: KNOWLEDGE ANDSKILLS OF EI PROVIDERS FORCHILDREN WHO ARE D/HH ANDTHEIR FAMILIES

This appendix includes a listing ofbroad competencies (knowledge andskills) related to the provision of earlydevelopment services for children whoare D/HH and their families. Thesecompetencies, compiled from 8 dif-ferent best practice and positionstatement documents,1,32,88–93 are thecore competencies recommended forearly development providers. Thecompilation of these core competen-cies recognizes that early de-velopment providers come fromdiverse professions (eg, audiology,early childhood special education,educators of the D/HH, and speech-language pathology). Although orga-nized into sections by content area,the competencies are intended to beconsidered as an entire set of practi-ces needed to work with this group ofchildren and families. For example,specific knowledge and skills havingto do with cultural competency areincorporated throughout various sec-tions in the document. Note: The Ap-pendix 1A–I tables were developed/compiled by A. Stredler-Brown, M. Sass-Lehrer, K. Clark, and M.P. Moeller.

APPENDIX 2: EXAMPLE OFFIDELITY OF INTERVENTIONMONITORING

Listening and LanguageSelf-Checklist for Colorado HomeIntervention Program (CHIP)Facilitators (Developed By NanetteThompson) Auditory SkillDevelopment

✓Did I do a version of the Ling 6+Sound Test? Did I reemphasize theimportance of consistency of use ofhearing aids/implants throughoutall waking hours? Did I do a listeningcheck of amplification?




Appendix 1A Family-Centered Practice: Family-Professional Partnerships, Decision Making, and Family Support

Providers Have the Knowledge and Skills to Best Practice Documents (Ref. No.)

1. Recognize the expertise and major impact of families on children’s growth and development 1, 32, 88, 90, 932. Understand family systems and family dynamics 32, 88, 90, 933. Establish respectful reciprocal relationships with families 32, 88, 90, 934. Demonstrate appropriate and effective listening strategies with families and others 32, 88, 90, 935. Facilitate families’ identification of concerns, priorities, and resources 32, 88, 90, 936. Implement strategies to promote infant-caregiver relationships and interactions 32, 88, 89, 90, 937. Promote and enlist help from family-to-family support networks 1, 32, 88–938. Support family health and emotional well-being 32, 88, 90, 939. Identify risks for abuse/neglect situations 32, 88, 90, 9310. Provide support and recognize signs indicating the need to refer for counseling/therapy or

other emotional support from specialists32, 88, 90, 93

11. Encourage family skills for collaboration with the EI team 1, 32, 88, 89, 91, 9312. Promote family involvement in all aspects of intervention 1, 32, 88, 89, 91, 9313. Promote informed decision making through provision of accurate and comprehensible

information, resources, and support.

1, 32, 93

14. Implement strategies for guiding and supporting families’ decisions regarding communicationapproaches/opportunities

1, 32, 88–93

15. Encourage family advocacy skills 1, 32, 88, 89, 91, 9316. Monitor family satisfaction with intervention services 1, 32

Appendix 1B Socially, Culturally, and Linguistically Responsive Practices Including D/HH Cultures and Communities: Sensitivity to and Respect for anIndividual Family’s Characteristics


1. Understand the diversity of families, languages, cultures, communities 1, 32, 88–932. Understand the influence of family, culture, and environment on infant development 1, 32, 88, 90–933. Understand the implications of socioeconomic and cultural differences in child rearing 1, 32, 88, 90–934. Demonstrate sensitivity to cultural, religious, ethnic, disability, gender, socioeconomic,linguistic, and geographic influences on children and families

32, 88, 93

5. Demonstrate understanding of and respect for deaf culture and D/HH communities 32, 91–936. Understand the role and resources of the deaf community, sign language interpreters,and cultural brokers

1, 32, 89, 92, 93

7. Appreciate the roles and access the resources of interpreters and cultural brokers whenworking with non–English-speaking families

32, 90, 91

8. Promote family’s understanding and appreciation of “being deaf or hard of hearing” None9. Understand the role and include resources of D/HH adults to promote language and socialdevelopment and use of technologies (auditory and visual)

1, 32, 89, 91, 92

10. Appreciate and respect cultural perspectives on selection and use of technology 3211. Implement culturally sensitive approaches 1, 32, 88–93

Appendix 1C Language Acquisition and Communication Development: Typical Development, Communication Approaches Available to Children WithHearing Loss, and Impact of Hearing Loss on Access to Communication


1. Understand developmental sequences across developmental domains and their complex interactions withcommunication

1, 32, 88, 90, 93

2. Understand the influence of variables such as age of identification/intervention on language (English and other spokenlanguages, ASL) and speech acquisition

32, 88, 93

3. Understand the effects of multiple language exposure on children’s development (ie, bilingualism in spoken languagesand in ASL), drawing upon current theories of bilingualism

32, 88, 90, 93

4. Understand the impact of hearing loss on communication, language, and speech 1, 32, 885. Promote the important role of caregivers in development of communication skills through caregiver-child interaction 1, 32, 88–936. Understand typical development sequences in auditory and visual perception 1, 32, 88–90, 937. Understand the array of communication approaches (eg, ASL, bilingual-bicultural, auditory/oral, auditory/verbal, cuedspeech, and simultaneous communication) and resources for observing and demonstrating them

1, 32, 88–90, 93

8. Understand augmentative communication approaches and circumstances in which they should be considered 90, 939. Understand the importance of involving D/HH adults in the promotion of children’s language and social development 1, 32, 89, 91, 92


Appendix 1C Continued


10. Provide families and children with access to skilled and experienced professionals to facilitate language developmentusing language and communication modalities selected by family and appropriate for the child

1, 32, 90

11. Coach families in the use of strategies that promote a language-rich learning environment to facilitate language, thought,and early literacy

1, 32, 88–93

12. Prepare families to be able to explain (or understand) the relationships among communication, language, and speech 1, 88, 9313. Assess prelinguistic and early linguistic communication stages 1, 32, 88, 9314. Understand communication and language assessment outcomes with reference to typical developmental sequences and

stages of spoken language development1, 32, 88–92

15. Interpret outcomes with reference to typical developmental sequences and stages of ASL for families using this approach 1, 32, 89, 91, 9216. Promote development of phonology, morphology, syntax, semantics, and pragmatics of spoken language and/or ASL 8817. Implement strategies to promote auditory learning in children who are D/HH 1, 32, 88–90, 9318. Implement strategies to promote visual language learning in children who are D/HH19. Embed goals within daily routines and integrate communication in a variety of social, linguistic, and cognitive/academic

contexts1, 32, 88–90, 93

20. Implement strategies that promote access to language using combined or multiple modalities 32, 88, 89, 91, 9221. Implement current practices for promoting auditory development for children with cochlear implants 1, 8822. Implement evidence-based communication practices with young children to facilitate child learning within developmentally

appropriate daily activities88, 90, 93

23. Monitor language development outcomes to guide intervention and promote age-appropriate abilities to the degreepossible

32, 88–91

Appendix 1D Factors Influencing Infant and Toddler Development

Providers have the knowledge and skills to Best Practice Documents (Ref No.)

1. Differentiate the characteristics and stages of typical/atypical development 1, 32, 88–912. Appreciate the range of individual differences in development and factors that influence them 1, 32, 88–933. Recognize the effects of prenatal care, prematurity, health, and other biological conditions ondevelopment

90, 93

4. Be aware of the health needs of young children and collaborate with the medical community toaddress them

93

5. Understand contemporary infant development theories including research on brain development 32, 88, 89, 936. Demonstrate sensitivity to infant states/cues and understand how responses contribute to infantdevelopment in child rearing

32, 93

7. Understand bonding/attachment theories and implications for development 938. Monitor stages of cognitive development and recognize the impact of cognitive delays on learning 32, 88, 899. Recognize the impact of multiple disabilities on development and understand the interdependenceof developmental domains

88–90, 93

10. Understand auditory, visual, and cross-modal perception and processing in relation to development 32, 88, 91–9311. Recognize the role of play and daily routines in development 32, 88, 90, 9312. Locate current evidence and resources related to contemporary studies of infant development 32, 88, 89, 9313. Facilitate infant/toddler engagement 88, 9014. Develop and implement age-appropriate interventions supportive of development in all domains andreflective of individuals’ interests

32, 88–90, 93

Appendix 1E Screening, Evaluation, and Assessment: Interpretation of Hearing Screening and Audiologic Diagnostic Information, OngoingDevelopmental Assessment, and Use of Developmental Assessment Tools to Monitor Progress


1. Distinguish between screening, observation, evaluation, and assessment 90, 932. Understand and facilitate referral processes (from screening, evaluation, and referral for services) 32, 933. Understand implications of universal newborn hearing screening for families and early interventionservices

1, 90, 93

4. Understand newborn hearing screening protocols, including instrumentation; appropriately interpretscreening results

1, 88

5. Understand pediatric audiologic procedures, including screening, evaluation, and interventions andaccurately interpret audiologic results

1, 88, 90, 93

6. Promote and provide input to appropriate audiologic and developmental evaluation procedures 32, 88, 937. Understand atypical development etiologies and diagnoses and refer for medical-genetic evaluation 1, 32, 88, 90, 93




Appendix 1E Continued


8. Know how to gather information from families that identifies their priorities, concerns, and resourcesrelated to their child’s development

32, 88, 90

9. Know current cochlear implant candidacy criteria 1, 8810. Recognize strengths and limitations of standardized instruments and adaptations for a child who is D/HH 90, 9311. Use assessment tools and strategies that are culturally, linguistically, and developmentally appropriate 32, 90, 9312. Understand and participate in interdisciplinary, transdisciplinary, and multidisciplinary assessment procedures

and processes90, 93

13. Implement assessment strategies and support family participation and involvement 32, 88, 9314. Implement principles/processes to appropriately assess the child in natural environments 88, 90, 9315. Monitor child progress by using appropriate tools and procedures 1, 32, 88–90, 9316. Convey assessment and evaluation results and recommendations in a manner that is understandable, accessible,culturally sensitive, and confidential

1, 32, 90, 92, 93

Appendix 1F Technology: Supporting Development by Using Technology to Access Auditory, Visual, and/or Tactile Information


1. Recognize the importance of the use of technology to access auditory, visual, and/or tactile information 1, 88–932. Recognize benefits and challenges of technology use with infants across multiple settings and activities 32, 88, 90, 933. Be knowledgeable about current augmentative communication technologies and their application withinfants with multiple special needs

88

4. Identify sources for obtaining assistive technology, information, funding, and support 1, 32, 935. Implement strategies to support families’ abilities to use and monitor effectiveness of technology 1, 32, 88, 90, 91, 936. Promote family skills in monitoring amplification and ensuring device retention and safety 1, 32, 88–907. Promote family learning and involvement using household, office, and community technology 32, 88, 93

Appendix 1G Planning and Implementation of Services: Creating a Lesson Plan, Conducting a Home Visit, Developing the IFSP, and Using AppropriateCurriculums, Methods, and Resources


1. Implement best practices related to the process of developing IFSPs and Individual Education Plans 1, 32, 88–90, 932. Collaborate with families to develop and implement the IFSPs as working documents 1, 32, 89, 90, 933. Plan and implement assessment-based instruction 88, 904. Select and systematically implement intervention strategies appropriate to the communication, hearing,speech, language, and emerging literacy needs of the child

88, 90

5. Revise intervention approaches as needed in response to the child and the family 1, 32, 88–90, 936. Plan and implement effective parent-child sessions in natural environments 32, 88, 907. Plan and implement center-based session (eg, play groups and peer groups) including developing effective lesson plans 32, 888. Participate in the planning and implementation of workshops/meetings for families None

Appendix 1H Collaboration and Interdisciplinary Models and Practices


1. Recognize roles and responsibilities of families and other individuals with expertise in deafness 1, 32, 89, 90, 932. Support consultation across disciplines and collaborate with families 1, 32, 88–90, 933. Recognize the roles and the importance of service coordination and medical homes 1, 32, 90, 934. Promote collaboration with community programs and resources to support families and children 1, 32, 905. Recognize intra/interpersonal variables that influence the development of collaborative relationshipswith parents and professionals

1, 32, 88–90, 93

6. Apply principles and strategies to support family members and professionals 1, 32, 88–90, 937. Implement collaborative strategies for communicating, decision making, and resolving conflict 32, 90, 938. Provide for a continuum of service delivery models to meet the needs of the individual child andfamily (eg, direct service, collaborative consultation, playgroup based)

90

9. Assume a leadership roles affecting collaboration, including self-evaluating, mentoring, networking,and advocating for families and organizations

32, 88, 90, 93


✓Did I incorporate music, nurseryrhymes, or singing into the ses-sion?✓Did I demonstrate high expecta-tions for auditory skill develop-ment in daily routines and naturalenvironments? Did I encourage avariety of listening activities in-cluding recorded music or bookson tape?✓Did I provide opportunities to lis-ten in a variety of environments in-cluding with varying distances andin quiet and noisy environments?✓Did I encourage the family to or-ganize the environment to maximizethe auditory potential of the child?(Decrease background noise, turnoff the TV, close the doors to thelaundry room, etc.)

Language Development

✓Did I use literature in the sessionor reference activities that encour-age early literacy skill development?✓Did I model expanding the child’sspontaneous language and discussthe importance of this strategy withthe parent? Did I use the Plus 1 ruleof expanding the child‘s utteranceby 1 additional word?✓Did I reward all attempts at com-munication?✓Did I focus on the developmentof language through listening? Did I

remind the parent to talk to the childthroughout daily activities?

Speech Sound Production

✓Did I expect, encourage, andelicit verbal responses within all ac-tivities?✓Did I use acoustic highlighting tofacilitate speech sound production?✓Did I note any speech errors andunderstand them to be developmen-tal, phonological, motor- related, orhearing-related in nature?

Techniques, Strategies, andCommunication

✓Did I provide commentary forparents of my session objectivesand my observations?✓Did I demonstrate scaffoldinga skill up and down to ensurethe child’s success and discussthat important process with theparent?✓Did I provide enough pause timeand encourage the parents to do soas well?✓Did I brainstorm with the parentsways to incorporate these strate-gies and objectives into their dailyroutines?✓Did I follow up with other profes-sionals working with the child?

✓Did I leave the parent feelingempowered and motivated for theupcoming week?

APPENDIX 3: EXAMPLE OF FIDELITYOF INTERVENTION MONITORING FORASL FOR USE BY PARENTS ANDPROVIDERS/FACILITATORS WITHCHILDREN AGES BIRTH TO ≥4 YEARS(DEVELOPED BY BETH S. BENEDICT,PHD, JODEE S. CRACE, MA, ANDPETRA HORN-MARSH, PHD)94,95

Visual Skill Development

� Did I monitor the child’s progres-sion through developmentalstages of ASL? Do I know whatbehaviors are typically observedat the preverbal stage, single-word stage, 2-word stage, andshort-phrase stage in young ASLusers? Do I emphasize the impor-tance of consistency of use of ASLby the family throughout thechild‘s waking hours? Do I do avisual‡ check of natural and

Appendix 1I Professional and Ethical Behavior: Foundations of EI Practice, Legislation, Policies, and Research


1. Understand history of deaf education, philosophy of early intervention, and child/family advocacy 88, 91, 92, 932. Understand EHDI programs and processes 32, 89, 903. Understand IDEA, federal legislation, and federal regulations related to infants/toddlers and their families 1, 32, 89, 90, 934. Recognize IDEA’s support for program evaluation and system change and the limitations of the law 32, 935. Support the rights, responsibilities, and confidentiality of children and their families 1, 32, 89, 916. Understand the role of Services Coordination and assist families in linking with this service 32, 907. Plan and implement seamless transitions to ensure continuity of services across educational and communityplacements

1, 32, 88–90, 93

8. Apply principles of evidenced-based practice and be conversant about current research evidence related toearly intervention

32, 88–90

9. Adhere to professional ethical standards in working with young children and families 32, 88, 89, 9310. Take personal responsibility to demonstrate a positive attitude toward infants, toddlers, and families 9311. Think critically and pursue life-long learning through ongoing professional development 1, 32, 88, 89, 93

‡Visual checks include picking the child up so he/she has a better view of what’s “up there” (ie,counter at McDonald’s to order food froma cashier), carrying the infant facing forward sothat the infant can see what the caregiver is doingand talking about, making sure that the child ispositioned so he/she has “the best eye view of theworld,” and ensuring that the caregiver hasa large rearview mirror in the car so that theparent and child can see each other better andthus the caregiver can “communicate” with theinfant or child.




structured development opportuni-ties and interactions that fosterskill growth?

� Did I model infant-directed sign(“motherese”), utilizing my facialexpressions and hand touches onthe baby?

� Did I model the use of and sup-port the family in ways to incor-porate finger play, nurseryrhymes, gestures, body language,or facial expressions into dailyroutines (active and passive activ-ities)?

� Did I demonstrate high expecta-tions for visual skill developmentin daily routines and natural envi-ronments? Do I encourage a varietyof visual activities including DVDs,print books, and storytelling thatare interactive?

� Did I provide opportunities forjoint engagement, incorporatingeye contact, eye gaze, and eyeshifting in a variety of environ-ments, at varying distances, andin nondistracting visual environ-ments? Do I know that the childis able to pay attention and isaware of the words being ex-changed? Do I support the familyin providing ample opportunityfor turn-taking to foster skill de-velopment?

� Did I encourage the family andother people to organize the envi-ronment to maximize visual poten-tial of the child (eg, the room iswell-lit, the background is not toographic, the seating is in appropri-ate proximity, and there are plentyof meaningful conversational ex-changes, appropriate to the child’sdevelopmental level)?

� Did I respond appropriately to thechild’s attempts to initiate and ex-press self (eg, do I show that I un-derstand through my ASL and thenbuild on to the child’s communica-

tive attempt)? Do I model theseskills for families and promotetheir use?

Language Development

� Did I use children‘s literature andother strategies to encourageearly literacy skill development?

� Did I model expanding the child’sspontaneous language and discussthe importance of this strategywith others involved? Do I use a lan-guage development checklist orscale to ensure that the child ismaking language gains withinage-appropriate intervals? Do I ex-pose the child to other languagemodels (adults and peers) so thatthe child can acquire a variety ofdevelopmental styles?

� Did I motivate, encourage, and rein-force all attempts at communication,supporting semantic, grammatical,social-pragmatic, and verbal reason-ing skills?

� Did I recognize the effects of thechild’s learning style and temper-ament on language develop-ment so that individual needsare consistently nurtured andsupported?

� Did I expect ASL acquisition to fol-low the developmental milestonessimilar to those of spoken lan-guage?

� Did I focus on monitoring thechild’s development of languagethrough watching/observing/attending and measuring out-comes? Do I recognize that thechild has initiated, maintained,and responded to conversation,including appropriately answer-ing basic questions?

� Did I coach the other parents/providers to communicate withthe child in ASL throughout dailyactivities and routines, includ-ing incidental conversation, side

conversations, and backgroundnoises?

ASL Production

� Did I expect, encourage, and elicitsigned responses from the childwithin all activities?

� Did I support the family in develop-ing similar expectations for thechild’s ASL production?

� Did I incorporate hand-shape, loca-tion, movement, palm orientation, fa-cial expression (non manual markerson eyes, face, and head), and bodyposture to facilitate ASL production?

� Did I note any ASL grammatical errorsmade by the child and considerwhether they are developmental, cog-nitive, motor, or visual in nature?

Techniques, Strategies, andCommunication

� Did I suggest and encourage the fam-ily to use Videophone, Skype, iChat,ooVoo, or other visual technology forongoing communication in ASL?

� Did I provide commentary forparents and/or providers/facilitatorson the language goals and observa-tions of the child’s emerging skillsand ongoing needs?

� Did I demonstrate ways to scaf-foldx a child’s emerging skills toensure the child’s success? Do Isupport the family in developingmethods for scaffolding thechild’s development (eg, assist-ing the child in making the ap-propriate hand-shape, beginningwith the 6 basic hand-shapes [B,A, C, 0, 5, 1], then increasing tomore complex hand-shapes[claw-5, claw-3]; supporting thecaregiver in knowing that thechild learning ASL typically has

xDid I foster skill growth to the next level usingvisual aids, manipulative, concrete examples, andsituations? For example, asking a child “which”question occurs before the next questioning level,such as who, what, or where?


a vocabulary of x number ofsigns by age 2, etc)?

� Did I provide enough pause timeand encourage the parentsand/or providers/facilitators to doso as well? Do I coach them on“give and take” strategies so thatthe child can develop independentcritical thinking skills?

� Did I brainstorm with the parentsand/or providers/facilitators onways to incorporate these strate-gies and objectives into their dailyroutines?

� Did I collaborate with otherproviders/facilitators (eg, occupa-tional therapist, physical therapist,speech language pathologist) serv-

ing the child and family members,sharing input, and providing ongo-ing development as well as opportu-nities to increase their ASL skills?

� Did I leave the parent and/orproviders/facilitators feeling em-powered and motivated to supportthe child’s ongoing ASL develop-ment?

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DOI: 10.1542/peds.2013-0008; originally published online March 25, 2013; 2013;131;e1324Pediatrics

Benedict, Bobbie Scoggins, Jodee Crace, Michelle King, Alice Sette and Beth MartinCraig Buchman, Albert Mehl, Betty Vohr, Mary Pat Moeller, Patti Martin, Beth S.

Christine Yoshinaga-Itano, Alison Grimes, Patrick E. Brookhouser, Stephen Epstein, JOINT COMMITTEE ON INFANT HEARING, Carianne Muse, Judy Harrison,

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Benedict, Bobbie Scoggins, Jodee Crace, Michelle King, Alice Sette and Beth MartinCraig Buchman, Albert Mehl, Betty Vohr, Mary Pat Moeller, Patti Martin, Beth S.

Christine Yoshinaga-Itano, Alison Grimes, Patrick E. Brookhouser, Stephen Epstein, JOINT COMMITTEE ON INFANT HEARING, Carianne Muse, Judy Harrison,

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