Joint Committee for Infant Hearing Position Statement, 2013 Update: Interview with Christie Yoshinaga-Itano
Douglas L. Beck, AuD, spoke with Dr. Yoshinaga-Itano, author of the "Statement of Endorsement (for the 2013 supplement to the JCIH 2007 Position Statement) Principles and Guidelines for Early Intervention After Confirmation That a Child Is Deaf or Hard of Hearing."
Academy: Good morning, Christie. It's always a pleasure to speak with you!
Yoshinaga-Itano: Hi, Doug. Good to speak with you, too.
Academy: You've been working with the Joint Committee for Infant Hearing (JCIH) for some 10 or 12 years or so?
Yoshinaga-Itano: Yes—maybe more! I've been very lucky and as you mentioned, I've been working with JCIH for many years. JCIH was started by Marion Downs and we've currently got an incredible group of committee members, including Carianne Muse, Judy Harrison, Alison Grimes, Patrick E. Brookhouser, Stephen Epstein, Craig Buchman, Albert Mehl, Betty Vohr, Mary Pat Moeller, Patti Martin, Beth S. Benedict, Bobbie Scoggins, Jodee Crace, Michelle King, Alice Sette, and Beth Martin.
Academy: And also, it's good to note that the JCIH is a group of multidisciplinary pediatric experts from audiology, speech-language pathology, pediatrics, and many other professions, who share knowledge across issues relating to infant hearing, development, speech-language pathology, and more. As far as professional organizations, JCIH includes (or had included) representatives from ASHA, AAA, AAP, AAO-HNS, The Council for the Education of the Deaf (including NAD, American Society for Deaf Children, AG Bell, CEASD, and more).
Yoshinaga-Itano: Yes, and to learn more about the JCIH, people can just click into their Web site at www.JCIH.org and they can learn the facts and the history of JCIH.
Academy: And I think most audiologists are familiar with the JCIH document from 2007 that basically described the "1-3-6" guidelines, which indicated that JCIH recommended all children need to be screened for hearing loss by 1 month, diagnosed by 3 months, and appropriately fitted by 6 months. Can you tell me how that's worked out?
Yoshinaga-Itano: Well, we've had tremendous success with screenings. Doug, as you know, some 98 or 99 percent of all children born in the United States are screened for hearing loss by age 1 month, so that's been great. What we need better data on are the other two factors. Diagnostic testing as follow-up to "failed screenings" seems to occur for about 52 percent of the children who failed the screening and were referred. Of course this is a troubling situation because some of the children are "lost to follow-up" or may be "lost to documentation" and they may or may not have had the diagnostic testing done.
The 2011 statistics indicate that 65.1 percent of the children referred for additional testing do have an audiological diagnostic evaluation. But we are still missing 34.9 percent and that is 20,615 infants. Of the 65 percent who return for follow-up, 71.8 percent were identified by 3 months of age. So there still a significant number of infants with hearing loss not diagnosed by 3 months of age.
Academy: And then the third issue is appropriate amplification by age 6 months. How's that working?
Yoshinaga-Itano: Well, again, we just don't know. Unfortunately, the state and federal reporting protocols don't give us the information we need to assess the situation, but my best guess, is this area, too, needs a lot more attention. We have some data about the referral process that indicates approximately how many children have been referred for amplification, but clearly we need more cohesion through the system so we'll be able to answer these very important questions.
Academy: And so besides the reporting systems not being integrated, what other major hurdles are in the way of the data collection?
Yoshinaga-Itano: Well, the major issue is the one we're all familiar with—funding. Unfortunately, the JCIH can recommend spectacular, brilliant, and well-researched recommendations, but JCIH cannot fund them. There's no universal funding!
Academy: And so who pitches in to help fund these initiatives?
Yoshinaga-Itano: Well, we're happy to have financial support from some of the hearing aid manufacturers, such as Oticon and Phonak, Starkey, and Widex. Their donations and hearing aid loaner banks make a word of difference with regard to fitting babies with hearing aids—but that only happens when the centers taking care of the babies know these opportunities are available.
So to me, this indicates that the audiologists and their state-based groups should be lobbying their state databases for better data acquisition and for better access to the data. Specifically, it would be great to have U.S.-gathered data from all hearing aid fittings. We suggest that the Speech Intelligibility Index (SII) would be a good data point, as that seems to be an excellent predictor of spoken language outcome, based on audibility.
Academy: Okay, so that pretty much sums up the status quo with respect to JCIH 2007, let's move on to the new 2013 document titled "Principles and Guidelines for Early Intervention After Confirmation That a Child Is Deaf or Hard of Hearing." Before I ask for your reflections on the dozen or so goals, let me quote from the same document, "The ultimate goal of EHDI is to optimize language, social, and literacy development for children who are D/HH." This is of note because so many people tell me that they don't want to fit this or that technology (such as digital noise reduction or perhaps adaptive directionality) until they're proven to be viable in children, I was so glad to see this included in the document:
"Randomized controlled trials are particularly difficult for ethical reasons, making it challenging to establish causal links between interventions and outcomes. Therefore, early intervention (EI) systems must partner with colleagues in research to document what works for children and families and to strengthen the evidence base supporting practices."
And so, I'll state the goals, and if you'd like to comment on each of them, that would be great.
Goal 1: All Children Who Are D/HH and Their Families Have Access to Timely and Coordinated Entry Into EI Programs Supported by a Data Management System Capable of Tracking Families and Children From Confirmation of Hearing Loss to Enrollment Into EI Services.
Yoshinaga-Itano: Some states have good or excellent data management systems, and others don't. These systems exist and report data to the Centers for Disease Control (CDC) and so we have that pathway—but some of the data management systems were not designed to track individual children. So sometimes we get group data but optimally we need to be able to track an individual child. So the main idea is we need to gather accurate and relevant data as quickly as possible. And I should say CDC has been a tremendous resource for us and they have been wonderful with regard to providing funding and knowledge to push these goals forward.
Academy: Goal 2: All Children Who Are D/HH and Their Families Experience Timely Access to Service Coordinators Who Have Specialized Knowledge and Skills Related to Working With Individuals Who Are D/HH.
Yoshinaga-Itano: Under Part C of the federal legislation, all children identified with a disability have a service coordinator. However, Part C is a non-categorical system, which means the service coordinator is not necessarily specially trained for the child's disability. And so we'd like to see systems identify service coordinators who have expertise in early-childhood hearing loss. .
Academy: Goal 3: All Children Who Are D/HH From Birth to 3 Years of Age and Their Families Have EI Providers Who Have the Professional Qualifications and Core Knowledge and Skills to Optimize the Child's Development and Child/Family Well-being.
Goal 3a: Intervention Services to Teach ASL Will Be Provided by Professionals Who Have Native or Fluent Skills and Are Trained to Teach Parents/Families and Young Children.
Goal 3b: Intervention Services to Develop Listening and Spoken Language Will Be Provided by Professionals Who Have Specialized Skills and Knowledge.
Yoshinaga-Itano: The Service Coordinators (Goal 2) are the professionals who have the first contact. When the families choose an early intervention service, they are provided service from an early intervention provider. However, not all of the providers are trained in early intervention specific to infants or toddlers who are deaf or hard of hearing or in training parents and families. Typically they do not have expertise in listening and spoken language strategies or in visual communication. .
Academy: Goal 4: All Children Who Are D/HH With Additional Disabilities and Their Families Have Access to Specialists Who Have the Professional Qualifications and Specialized Knowledge and Skills to Support and Promote Optimal Developmental Outcomes
Yoshinaga-Itano: Yes, and this goal stems from the fact that some 35 percent or more of children who are D/HH have additional disabilities and so this goal allows for collaborative teams, as very few people can be expert is all the areas and sub-specialties.
Academy: Goal 5: All Children Who Are D/HH and Their Families From Culturally Diverse Backgrounds and/or From Non–English-Speaking Homes Have Access to Culturally Competent Services With Provision of the Same Quality and Quantity of Information Given to Families From the Majority Culture
Yoshinaga-Itano: Basically this goal states that the families who speak languages other than English and/or are from diverse cultures, should have equal access to competent services. Providers need to have training about providing and tuning hearing aids to maximize the sounds of the native language (i.e., tonal languages are very different from English and most European languages, and appropriate hearing aid settings should be applied). They also need to know the development of phonemes in the child's native language and the how the audbility of these phonemes may be impacted by a congenital hearing loss.
Academy: Goal 6: All Children Who Are D/HH Should Have Their Progress Monitored Every 6 Months From Birth to 36 Months of Age, Through a Protocol That Includes the Use of Standardized, Norm-Referenced Developmental Evaluations, for Language (Spoken and/or Signed), the Modality of Communication (Auditory, Visual, and/or Augmentative), Social-Emotional, Cognitive, and Fine and Gross Motor Skills.
Yoshinaga-Itano: Progress not only has to be monitored, but needs to be monitored using standardized evaluation tools which are scaled and normed with respect to typically developing children.
Academy: Goal 7: All Children Who Are Identified With Hearing Loss of Any Degree, Including Those With Unilateral or Slight Hearing Loss, Those With Auditory Neural Hearing Loss (Auditory Neuropathy), and Those With Progressive or Fluctuating Hearing Loss, Receive Appropriate Monitoring and Immediate Follow-up Intervention Services Where Appropriate.
Yoshinaga-Itano: The first issue here is that many parents who hear the term "auditory neuropathy spectrum disorder" seem to confuse it with autism. So that's a big hurdle in our terminology and so we decided to use "auditory neural hearing loss." But the major issue is that in many states, these children (children with unilateral hearing loss and children with ANSD ) are excluded from services based on the way the states have defined hearing loss. Further, it's likely that for some 20 or more percent of children with hearing loss, their hearing loss is progressing, and again, they're not being monitored very well.
Academy: Goal 8: Families Will Be Active Participants in the Development and Implementation of EHDI Systems at the State/Territory and Local Levels.
Goal 9: All Families Will Have Access to Other Families Who Have Children Who Are D/HH and Who Are Appropriately Trained to Provide Culturally and Linguistically Sensitive Support, Mentorship, and Guidance.
Yoshinaga-Itano: These two goals address family-to-family or parent-to-parent support for the family of the child identified as D/HH. In fact, some states use the "Guide by your side" concept, which means families have early access not only to professionals, but also to parents who have a child who is deaf or hard of hearing. , and of course that makes it much easier for the parent of the newly identified child
Academy: And the last three goals are:
Goal 10: Individuals Who Are D/HH Will Be Active Participants in the Development and Implementation of EHDI Systems at the National, State/Territory, and Local Levels; Their Participation Will Be an Expected and Integral Component of the EHDI Systems.
Goal 11: All Children Who Are D/HH and Their Families Have Access to Support, Mentorship, and Guidance From Individuals Who Are D/HH.
Goal 12: As Best Practices Are Increasingly Identified and Implemented, All Children Who Are D/HH and Their Families Will Be Ensured of Fidelity in the Implementation of the Intervention They Receive.
Yoshinaga-Itano: Right. And in particular, goals 11 and 12 are applicable to D/HH professionals who are active in the EHDI system. For example, in our state, in one of the largest diagnostic centers, when the audiologist diagnoses a baby with hearing loss, they tell the parents the information and then the audiologist walks the parents to a counselor who is D/HH, profoundly deaf and is a cochlear implant user, and they meet for 30 to 60 minutes with someone who can speak from a firsthand perspective about what it's like growing up D/HH. And as you can imagine, that's very meaningful!
Academy: Thanks, Christie. You've been very generous with your time and I am very appreciative of your expertise and leadership! I know we're way over the time limit, so I'll conclude with another quote from the 2013 document.
"In conclusion, this best practice statement has advocated the implementation of coordinated statewide systems with the expertise to provide individualized, high-fidelity EI programs for children who are D/HH and their families. Consistent monitoring of child and family outcomes is an essential step toward ensuring optimal outcomes for the majority of children. There is a great need to strengthen the evidence base supporting specific EI approaches. The establishment of practice standards, implementation of developmentally appropriate protocols for monitoring of outcomes, and commitment to research collaborations are critical steps toward this goal."
Christie Yoshinaga-Itano, PhD, is the professor and chair of the Department of Speech, Language and Hearing Sciences at the University of Colorado, Boulder.
Douglas L. Beck, AuD, is the Web content editor for the American Academy of Audiology.