How Collaboration Impacts Early Intervention and EHDI Systems
Written By: Melody Bertrand
On March 7, the National Center for Hearing Assessment & Management (NCHAM), Hearing First, and the Alexander Graham Bell Association for the Deaf and Hard of Hearing (AG Bell) collaborated to present The Linguistic Genius of Babies where attendees heard Dr. Patricia Kuhl discuss cutting edge research on infant brain development.
The one-day conference organizers (Teresa Caraway – Hearing First; Karl White – NCHAM; and Gayla Guignard – AG Bell) recently reflected on Dr. Kuhl’s presentation and the far reaching impact conferences like this can have on fully supporting Listening and Spoken Language (LSL) early intervention services for infants and children who are deaf or hard of hearing.
What, from each of your perspectives, do you think were some of the key takeaways for conference attendees?
Caraway: I hope that participants took the mounting evidence about critical periods for auditory development in the first year of life as a powerful reminder of how much babies are learners from day one. Dr. Kuhl’s research shows how while we think the critical window of learning and development is ages 0-3, it is really those first few months that are also very critical. And that when we talk about Early Hearing Detection and Intervention (EHDI) particularly, we are way behind with the 1-3-6 months standard. We really need to be moving back intervention to when infants are days and weeks old.
Guignard: What I would add is the reason we held this conference prior to the EHDI meeting was to engage people we might not normally reach within our current communities. I believe there are greater opportunities to impact EHDI with this level of research. We’re doing great with screening about 98% of babies. And the world has changed, no doubt, because of EHDI. However, because early intervention services occur locally, it is the individual states that can have more impact in reaching families of children earlier.
We have the tools through newborn hearing screening, and we need to make sure babies get what they need right away. I would like to see the priority in state early intervention systems progress in terms of understanding that babies need to be diagnosed as quickly after newborn hearing screening as possible and that getting started today is the most important day in every child’s life. Dr. Kuhl’s presentation was a sounding alarm for that urgency. Children who are deaf or hard of hearing need to be a candidates for direct services right away.
White: This conference helped expand and solidify awareness about the research Dr. Kuhl has been doing for so many years. Some people were vaguely aware of her work, but now we have several hundred leaders in the EHDI system who are much more aware of it. And those people will influence the EHDI system like yeast in bread—it’ll spread throughout.
What do you hope will be the impact of this conference, or future learning opportunities like this, on EHDI systems?
Guignard: There is an understanding now that early intervention is to be handled by the early intervention programs in the state and that EHDI has a role in this. What I really would like to know, and wonder if you, Karl, have an opinion, is if EHDI programs are talking about early intervention and if they are experiencing a lot of barriers in terms of getting families to early intervention services. The message I hope attendees got from this conference is that the time is now. Time is of the essence. And we do have research that says this birth to 6 month period is paramount and that it is really, really important to provide direct early intervention services during this time frame.
White: As I am listening to you Gayla, I definitely believe we helped a lot of the EHDI coordinators feel the urgency. At the same time, we probably frustrated them a little bit. I say that because EHDI coordinators are beginning to understand more and more that the Part C system is responsible for delivering early intervention services, whereas EHDI is responsible for identifying children with hearing loss and helping their parents gain access to the Part C system. But it’s really the Part C system that has statutory and pragmatic responsibility for delivering appropriate early intervention to those children.
There is an increased communication between Part C and EHDI programs. But we’ve got to help our partners at local, state, and federal levels understand that for this collaboration to really take off, the Part C system needs to be participants and that EHDI can only go so far. In some ways we are setting up expectations for the EHDI program that they don’t have the statutory authority, money, or operational experience to deliver on. It makes EHDI programs frustrated. They care about children and they understand how important it is to identify children who are deaf or hard of hearing, but they don’t, in most cases, have the authority or the tools to deliver early intervention services.
One of the things I think ought to come out of this conference and would raise awareness is more direct contact with Part C policy makers. Everyone has to understand that Part C is a critical part of this, and that they have to be an appropriate part of this. It’s about giving appropriate early intervention to children as early as possible and absolutely no later than 6 months of age.
Caraway: The reason why we are having this discussion is because we all want to learn and do a better job of supporting families in reaching their desired outcomes. I think the opportunity to hear someone like Dr. Kuhl put an emphasis on the ‘why’ we’re doing all this keeps focus so that together we get alignment that this is about brain development and supporting families in optimizing their child’s brain development. EHDI is the first step in achieving that goal.
Guignard: When we do any work, I think we all think about what the impact is going to be. Like Karl said, we have to figure out how to get the Part C system involved because most intervention is happening either through Part C, or families are having to work around through a private, non-Part C alternative because the Part C system doesn’t work for them.
White: In 2010, when EHDI legislation was being reauthorized, there was a lot of talk about how do we put the ‘I’ in EHDI. It was the right goal but it was misinterpreted by some people because they concluded that the EHDI programs were responsible for delivering early intervention. In reality, putting the ‘I’ in EHDI requires getting Part C programs at the table in a big way. The 2010 reauthorization of EHDI made some people think that the Health Resources and Services Administration (HRSA) was responsible for early intervention with children who are deaf or hard of hearing. But HRSA doesn’t have the authority, the expertise, the infrastructure, or the experience.
I think we need to do a course redirection here to say we want HRSA concerned and we want EHDI programs concerned about early language development. To do that, the Part C system needs to be putting resources into early intervention programs for children who are deaf or hard of hearing. The focus must change for those children who are deaf or hard of hearing to get the resources they need to really take advantage of the early brain development timeline.
Caraway: To me, there is such a critical step, whether it is through EHDI or Part C, and that is getting hearing technology on babies. When I think of intervention, I think that’s where intervention begins. Children diagnosed as deaf or hard of hearing will need hearing technology to start stimulating the auditory brain pathways. Based on one of the things I heard from Dr. Kuhl, we have this huge gap for fitting hearing technology on babies appropriately because auditory skill development starts much earlier than we ever thought it did in terms of what she’s seeing in babies with typical hearing.
That to me is a huge next link…how are we going to manage a child’s hearing loss. I think access to hearing technology is the next key step.
White: Getting hearing technology on kids is directly linked with the diagnostic portion of the EHDI system. As soon as newborn hearing screening is completed, we begin to mix up who is now responsible for the child. I don’t have any problem with pushing EHDI programs even more to do earlier and better diagnostics and making sure that very young children with hearing loss have immediate access to appropriate assistive hearing technology. Dr. Kuhl’s message is that we all need to be working together to make sure these steps happen as quickly as possible.
We need to start making connections with the early interventionists as soon as possible, better than we have in the past. That’s a message you can sell to EHDI coordinators and have them feel they have some authority and some responsibility. The great thing about Dr. Kuhl was that she brought in world class science that people were somewhat aware of and she helped to solidify that knowledge. She is a great presenter, and she shocked people out of their complacency in a very positive way.
I think we should have a similar kind of meeting next year where we really put the emphasis on trying and get as many people directly involved in the Part C system as possible. If we can get people in the room as part of the conversation, they will go back saying, ‘Wow, deaf kids are my responsibility and we ought to be doing more and there is science behind it.’
Caraway: There are vital pieces and steps for families and we have to think through how families are getting through those steps. One of the things that triggered for me is that people may have been familiar with Dr. Kuhl’s work, but they probably hadn’t thought of it relative to newborn hearing screening. That was the opportunity to have this cutting edge, world renowned researcher say how this evidence could now inform EHDI practices.
This interview has been condensed for space. Read the full interview here.
Early Hearing Detection and Intervention (EHDI) programs exist to ensure that all babies in a given geographical location (e.g. state) are screened for hearing loss shortly following birth and that any recommended follow-up (e.g. a comprehensive hearing evaluation by a pediatric audiologist) occurs quickly. Most babies who are identified as being deaf or hard of hearing are eligible for and should be enrolled in direct early intervention services right away.
Find information about the EHDI program in your state/territory here: http://www.infanthearing.org/states/index.html
Find information about the Early Intervention system in your state/territory here: https://www.ideainfanttoddler.org/state-contacts.php