WEBVTT

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Welcome.

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I know

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most of you are first time attendees.

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If this is your first time,

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raise your hand.

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Okay, so pretty much everyone.

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Okay. Welcome.

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Welcome to the family.

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EHDI is like a family and you’re now in it.

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So, good to see you today.

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We're going to spend

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about 90 minutes with you.

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My name is Stephanie McVicker, I’m gonna kick us off,

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I'm representing the directors

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of speech

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and hearing programs

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at the state health and welfare agencies,

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otherwise known as DSHPSHWA,

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which is a mouthful.

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So we just call ourselves the Dips.

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And basically we're

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the national organization

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of EHDI coordinators.

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And I'm going to provide

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a historical overview

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and the current status of many programs.

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Hearing loss

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is one of the most common

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conditions detected at birth

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through newborn and screening.

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And as a matter of fact, about 2 in 1000

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infants are diagnosed

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every year in the United States.

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The Centers for Disease Control

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and Prevention,

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otherwise known as the CDC.

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They collect EHDI data, and every year

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the states or territories,

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which do have to submit our EHDI data

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to let them know how we’re doing.

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And the most recently published cohort

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is the birth cohort of 2022.

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And in that year, in the U.S.,

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almost 63 (hundred)

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infants were diagnosed

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regarding a screen

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with a hearing difference.

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If you look at the pie chart,

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the yellow represents unilateral

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or here in differences in one ear.

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So about a third are diagnosed

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with hearing difference in one ear.

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Conversely, two thirds

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and bilaterally affected.

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You can see it's a very colorful pie chart.

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And that's

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because hearing it's not all or nothing.

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There is a wide variety of

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severities that are diagnosed and

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am I getting an 

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echo?

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Does anyone hear an echo?

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or is it just me? A little bit?

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Right, it seems kind of 

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kind of echoey.

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I'll try.

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Can you still hear me if I go back a bit?

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Back.

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Okay.

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Let's give that a try

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and see if that's better.

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So as audiologists,

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we graph hearing capabilities

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on what we call an audiogram.

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And if you look at the horizontal

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x axis you have low pitches

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going high pitch as you move to the right.

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If you look at the vertical axis

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you have sound.

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It gets louder as you move down the page.

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The first

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blue line above that,

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what we consider a typical hearing.

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And then as you move down the graph,

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you'll start to see mild to moderate,

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severe and profound hearing losses.

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The yellow

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banana, the speech banana

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in the center of the page represents

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where the sounds of the English language

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fall during 

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typical average loudness conversation.

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So if a child has a hearing difference

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on the graph below that

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yellow speech banana,

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they're not going to be able to hear

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the sounds of the English language.

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There's different types of hearing losses

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that are identified.

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And to this

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we're looking at the anatomy of the ear.

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And so you have the pinna

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or the external ear, the ear canal

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and the ear drum.

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That's your external ear.

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The next part,

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it's the pink part of three

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of 3 little tiny bones.

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Those are called the ossicles.

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That’s the middle ear space.

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In a healthy ear it is air-filled

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And if there's a tissue

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in the external or middle ear,

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that's called a conductive hearing loss.

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And many of those,

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hearing

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losses, can be remediated medically.

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If moving up forward towards the brain,

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in the auditory system,

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you see the blue

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what looks like a snail.

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The ear is the hearing of balance

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and hearing, and the

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lower

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part of the body of the snail

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is the hearing organ.

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The sense organ of hearing

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is called the cochlea,

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and there's little tiny hair

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cells in there that help transmit

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the sound to the brain.

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If there is an issue in that part of the ear

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that hearing loss

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would be considered a sensory-neural hearing loss,

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and that is not something

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that typically can be treated

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or remediated in a medical fashion.

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Now, sometimes hearing losses are

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even further in the auditory system

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up towards the brain.

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And that represents the yellow.

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That's the auditory nerve.

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And sometimes there's an issue here.

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And if there's a result

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of the hearing loss in that area,

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that's called an auditory neuropathy,

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which has many different variations.

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So they call it a spectrum disorder.

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But I'm just going to refer to this

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as auditory neuropathy.

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Going back to those 2022 births,

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of those 6300 children

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that were identified,

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the bottom bar represents

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sensorineural hearing loss.

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So the vast majority are diagnosed

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with sensory hearing loss.

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If you look at the smallest bar,

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about 5% were diagnosed with

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auditory neuropathy.

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And what we do know

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is about 90% of children

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who are diagnosed

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with auditory neuropathy

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are usually resided in the IC

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or the neonatal intensive care unit.

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So let's talk about any early

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hearing detection intervention.

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So in the early days, a few decades ago,

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children weren't identified

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until they were two and a half

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to three years of age.

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And the critical window

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for language learning,

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oral aural language was mixed,

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and it usually only occurred

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when there were

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already significant speech and language

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delays that were present.

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Now, these late detections

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caused irreversible setbacks,

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and it affected

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not just hearing, but the child's social

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emotional language

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and also their cognitive development.

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So in

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1963, there was this amazing woman.

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She lived to 100 years old.

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And Doctor Marion Downs from Colorado.

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She pioneered the very first infant hearing

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screening program.

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And she put loud sounds

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near the baby's head.

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And then she watched for their reaction.

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That was called behavioral observation.

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That was revolutionary at the time,

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but it was very subjective,

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and I relied on a human being to decide

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if there was a response or not.

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And so a lot of hearing losses

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were missed,

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particularly

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if they were mild to moderate in nature.

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So the Joint Committee on Infant Hearing

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brought together a bunch of organizations

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that were dealing with audiology

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and speech language pathology

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and medical providers, and

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they put forth a position statement

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at the end of the decade and they said,

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yes, hearing screening should take place

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if there's an infant that has a high risk

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they’re on the high risk register.

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Some examples are if they were born

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with jaundice,

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they were born with some type infection,

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and they had a family history,

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and if they were 

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in the NICU.

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and that was a good start.

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And it missed though about 50% of

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hearing differences,

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because we know that most deaf

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and hard of hearing

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infants are born to healthy parents,

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and they have no known risk factors.

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In the

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1970s and 80s, technology

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really exploded and major breakthroughs

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that helped us with universal

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newborn hearing screening took place. In 1971

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Jewett and Williston, 

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they discovered and developed

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the Auditory Brainstem Response test

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or ABR.

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That picture shows an infant having an ABR done.

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Small sensors or electrodes are placed

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on the baby's head.

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Sound is delivered to their ears,

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and those little sensors

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measure the electrical response to sound.

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Now, as audiologists

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were looking at waveforms.

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And there's the graph of what

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the actual auditory brainstem

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response is on the right.

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And eventually,

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when the brain is no longer

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picking up

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the sound, those waves will disappear.

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Now, it was groundbreaking

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that we had the ABR test,

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but it didn't lend itself

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well to a screening program.

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It was expensive,

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lengthy test,

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and it only could be conducted

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by an audiologist

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who had

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the necessary skills and expertise to run

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the test.

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In 1978,

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though, over in

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the United Kingdom, Doctor

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Kemp discovered OAEs or otoacoustic emissions.

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He discovered that the cochlea

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not only perceived sound,

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but if it was healthy

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and those little hair cells inside

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were working

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would actually produce

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some echo that would be measured

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by the probe that delivered the sound.

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And this was a game changer

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because it was quick and easy.

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You can train a nurse in the hospital

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to do the screening.

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It only took a few minutes,

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and in 87 ALGO-1 came out,

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which had the ABR technology,

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but it was automated

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and again,

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it could be done

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by a nurse in the hospital,

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and it was a much quicker

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and easier test,

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and it removed all subjectivity.

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We weren’t relying

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on someone to look at the wave forms

291
00:09:20.393 --> 00:09:22.341
the screening device produced

292
00:09:22.361 --> 00:09:26.712
a pass or fail response.

293
00:09:26.732 --> 00:09:28.981
Fast forward to 1988 to

294
00:09:29.001 --> 00:09:32.184
1993, and a universal newborn

295
00:09:32.204 --> 00:09:34.186
hearing screening project

296
00:09:34.206 --> 00:09:35.354
called the Rhode Island

297
00:09:35.374 --> 00:09:36.522
Hearing Assessment Project

298
00:09:36.542 --> 00:09:38.524
by our very own doctor Karl White.

299
00:09:38.544 --> 00:09:40.626
I think some of us may know or

300
00:09:40.646 --> 00:09:42.128
heard of him,

301
00:09:42.148 --> 00:09:43.696
but it was federally

302
00:09:43.716 --> 00:09:45.197
funded by the government,

303
00:09:45.217 --> 00:09:46.666
and it was the first large scale

304
00:09:46.686 --> 00:09:48.067
clinical evaluation

305
00:09:48.087 --> 00:09:49.869
of a universal newborn hearing screening.

306
00:09:49.889 --> 00:09:51.370
And they showed

307
00:09:51.390 --> 00:09:53.172
that it was feasible

308
00:09:53.192 --> 00:09:54.440
and it could happen

309
00:09:54.460 --> 00:09:55.741
to have a statewide

310
00:09:55.761 --> 00:09:57.043
universal newborn hearing

311
00:09:57.063 --> 00:09:59.845
screening in hospitals.

312
00:09:59.865 --> 00:10:01.347
So a lot of things started happening

313
00:10:01.367 --> 00:10:02.515
after that.

314
00:10:02.535 --> 00:10:05.551
So in 1993, the first position came out

315
00:10:05.571 --> 00:10:06.852
the consensus statement

316
00:10:06.872 --> 00:10:08.654
from National Institutes of Health

317
00:10:08.674 --> 00:10:10.623
that said every baby should be screened

318
00:10:10.643 --> 00:10:11.390
for hearing loss

319
00:10:11.410 --> 00:10:13.225
before they leave the hospital.

320
00:10:13.245 --> 00:10:16.562
And then the JCIH formally endorsed

321
00:10:16.582 --> 00:10:17.697
universal newborn hearing

322
00:10:17.717 --> 00:10:20.433
screening the year after that.

323
00:10:20.453 --> 00:10:21.100
So states

324
00:10:21.120 --> 00:10:22.902
that were involved in the

325
00:10:22.922 --> 00:10:24.337
seminal Rhode Island

326
00:10:24.357 --> 00:10:25.805
Hearing Assessment Project.

327
00:10:25.825 --> 00:10:26.672
They got on board

328
00:10:26.692 --> 00:10:28.140
and they passed a universal

329
00:10:28.160 --> 00:10:29.141
newborn hearing screening

330
00:10:29.161 --> 00:10:31.110
laws and mandates in their states,

331
00:10:31.130 --> 00:10:31.844
Hawaii and Rhode

332
00:10:31.864 --> 00:10:33.813
Island were the first ones.

333
00:10:33.833 --> 00:10:35.681
And then the federal government

334
00:10:35.701 --> 00:10:36.916
really got on board

335
00:10:36.936 --> 00:10:39.285
with funding states and territories

336
00:10:39.305 --> 00:10:41.253
to create their own

337
00:10:41.273 --> 00:10:42.755
universal newborn hearing

338
00:10:42.775 --> 00:10:45.091
screening for EHDI programs.

339
00:10:45.111 --> 00:10:48.427
And that happened in 1999.

340
00:10:48.447 --> 00:10:50.096
By 2003,

341
00:10:50.116 --> 00:10:51.430
there were 43 states

342
00:10:51.450 --> 00:10:53.699
that had enacted state legislation

343
00:10:53.719 --> 00:10:55.768
for universal newborn hearing screening.

344
00:10:55.788 --> 00:10:59.271
And although not every state has a law,

345
00:10:59.291 --> 00:11:03.643
they all have a program.

346
00:11:03.663 --> 00:11:06.045
So this changed the landscape.

347
00:11:06.065 --> 00:11:10.349
So, less than 5% were screened in 94

348
00:11:10.369 --> 00:11:11.183
going forward

349
00:11:11.203 --> 00:11:11.951
a decade,

350
00:11:11.971 --> 00:11:14.286
and more than 90% of our newborns

351
00:11:14.306 --> 00:11:15.821
were receiving their screening

352
00:11:15.841 --> 00:11:18.557
before they left the hospital.

353
00:11:18.577 --> 00:11:20.760
So this really changed the landscape.

354
00:11:20.780 --> 00:11:22.662
So we went from two and a half

355
00:11:22.682 --> 00:11:24.930
to three years of age and diagnosis

356
00:11:24.950 --> 00:11:30.903
to two and a half to three months of age.

357
00:11:30.923 --> 00:11:32.071
 Our friends with JCIH

358
00:11:32.091 --> 00:11:33.706
put out another position

359
00:11:33.726 --> 00:11:34.940
statement in 2000,

360
00:11:34.960 --> 00:11:36.042
and they defined

361
00:11:36.062 --> 00:11:38.844
our EHDI 1-3-6 milestones.

362
00:11:38.864 --> 00:11:40.112
And they said every child should 

363
00:11:40.132 --> 00:11:41.280
their hearing screened

364
00:11:41.300 --> 00:11:42.281
before one month.

365
00:11:42.301 --> 00:11:44.083
They should have a diagnosis

366
00:11:44.103 --> 00:11:45.151
before three months,

367
00:11:45.171 --> 00:11:46.452
and if they are diagnosed

368
00:11:46.472 --> 00:11:48.020
as deaf or hard of hearing,

369
00:11:48.040 --> 00:11:49.555
be enrolled in early intervention

370
00:11:49.575 --> 00:11:50.389
for six months.

371
00:11:50.409 --> 00:11:51.357
And they stated,

372
00:11:51.377 --> 00:11:52.658
how important it was that 

373
00:11:52.678 --> 00:11:53.926
that infant reached

374
00:11:53.946 --> 00:11:55.861
all three milestones to have

375
00:11:55.881 --> 00:12:02.134
their best chance of success.

376
00:12:02.154 --> 00:12:03.469
So the

377
00:12:03.489 --> 00:12:05.004
federal government we’re very lucky

378
00:12:05.024 --> 00:12:05.938
is still continuing

379
00:12:05.958 --> 00:12:07.306
to fund any programs

380
00:12:07.326 --> 00:12:08.874
the Centers for Disease Control

381
00:12:08.894 --> 00:12:09.842
or the CDC.

382
00:12:09.862 --> 00:12:11.677
Their primary focus of their funding

383
00:12:11.697 --> 00:12:13.479
is on data surveillance, data

384
00:12:13.499 --> 00:12:14.580
analysis, data

385
00:12:14.600 --> 00:12:15.614
integration, data

386
00:12:15.634 --> 00:12:17.917
interoperability, tracking.

387
00:12:17.937 --> 00:12:22.221
The data in 39 states have this funding.

388
00:12:22.241 --> 00:12:25.291
HRSA,  all 59 territories

389
00:12:25.311 --> 00:12:26.826
have HRSA funding,

390
00:12:26.846 --> 00:12:28.360
and it's focused on supporting

391
00:12:28.380 --> 00:12:30.029
providers and family service

392
00:12:30.049 --> 00:12:31.530
delivery to access,

393
00:12:31.550 --> 00:12:34.300
reducing lost to follow-up, providing

394
00:12:34.320 --> 00:12:37.336
 parent to parent support

395
00:12:37.356 --> 00:12:40.272
So our modern EHDI programs

396
00:12:40.292 --> 00:12:42.341
are much more

397
00:12:42.361 --> 00:12:45.511
than just the one, the three and the six.

398
00:12:45.531 --> 00:12:46.612
It's amazing.

399
00:12:46.632 --> 00:12:48.280
And they need to meet their milestones,

400
00:12:48.300 --> 00:12:50.082
but so much more is involved

401
00:12:50.102 --> 00:12:51.250
in making sure

402
00:12:51.270 --> 00:12:54.253
that the child and family are supported.

403
00:12:54.273 --> 00:12:57.356
So our systems include

404
00:12:57.376 --> 00:12:58.924
hoping to have a medical home

405
00:12:58.944 --> 00:13:00.259
for every child.

406
00:13:00.279 --> 00:13:01.660
Training providers

407
00:13:01.680 --> 00:13:04.363
so they know how to talk to families.

408
00:13:04.383 --> 00:13:05.831
Where to refer children

409
00:13:05.851 --> 00:13:07.533
when they're diagnosed.

410
00:13:07.553 --> 00:13:09.969
Family to family support is provided.

411
00:13:09.989 --> 00:13:11.937
Unbiased information.

412
00:13:11.957 --> 00:13:13.973
Every communication option

413
00:13:13.993 --> 00:13:16.942
is being presented to families.

414
00:13:16.962 --> 00:13:19.178
And our current HRSA project

415
00:13:19.198 --> 00:13:21.113
we’re keeping our eyes on the prize.

416
00:13:21.133 --> 00:13:22.448
And we're being charged

417
00:13:22.468 --> 00:13:23.983
with collecting language

418
00:13:24.003 --> 00:13:26.318
outcome data on deaf and hard of hearing

419
00:13:26.338 --> 00:13:29.522
children at the age of three.

420
00:13:29.542 --> 00:13:31.190
So ultimately,

421
00:13:31.210 --> 00:13:31.657
the goal of EHDI

422
00:13:31.677 --> 00:13:34.960
has never been just to test hearing.

423
00:13:34.980 --> 00:13:37.396
Our goal is to ensure that every deaf

424
00:13:37.416 --> 00:13:38.631
or hard of hearing child

425
00:13:38.651 --> 00:13:40.800
achieves their full potential,

426
00:13:40.820 --> 00:13:45.037
and everyone is here doing it together.

427
00:13:45.057 --> 00:13:46.205
And I'm going to turn the time

428
00:13:46.225 --> 00:13:48.674
over to my dear friend and colleague,

429
00:13:48.694 --> 00:13:54.664
Linda Hazard.

430
00:13:54.684 --> 00:14:01.587


431
00:14:01.607 --> 00:14:02.021
Okay.

432
00:14:02.041 --> 00:14:03.355
And I am the short one

433
00:14:03.375 --> 00:14:04.056
who has trouble

434
00:14:04.076 --> 00:14:08.561
seeing my slides without a stool here,

435
00:14:08.581 --> 00:14:11.096
so I will stand on my tippi toes.

436
00:14:11.116 --> 00:14:12.731
So I’m Linda Hazard

437
00:14:12.751 --> 00:14:16.001
I am the Vermont EHDI program director

438
00:14:16.021 --> 00:14:19.572
and have been so for the last 17 years.

439
00:14:19.592 --> 00:14:20.172
And enjoyed

440
00:14:20.192 --> 00:14:21.073
working

441
00:14:21.093 --> 00:14:22.241
with all of the members

442
00:14:22.261 --> 00:14:24.109
of the EHDI community.

443
00:14:24.129 --> 00:14:24.977
As Stephanie

444
00:14:24.997 --> 00:14:29.114
mentioned, they’re really family.

445
00:14:29.134 --> 00:14:31.717
So EHDI state and territory programs

446
00:14:31.737 --> 00:14:33.886
who are we?

447
00:14:33.906 --> 00:14:34.587
State EHDI

448
00:14:34.607 --> 00:14:37.756
programs are different state to state.

449
00:14:37.776 --> 00:14:40.826
And I have to give credit to Karl White,

450
00:14:40.846 --> 00:14:41.961
who has always

451
00:14:41.981 --> 00:14:44.430
said that if you know one EHDI state,

452
00:14:44.450 --> 00:14:45.331
you know one.

453
00:14:45.351 --> 00:14:47.867
Excuse me, if you know one EHDI program,

454
00:14:47.887 --> 00:14:51.570
you know one EHDI program.

455
00:14:51.590 --> 00:14:52.805
There are 50 states

456
00:14:52.825 --> 00:14:56.275
and nine territories.

457
00:14:56.295 --> 00:14:57.810
And we currently the current

458
00:14:57.830 --> 00:14:59.178
federal legislation

459
00:14:59.198 --> 00:15:00.212
is that we serve

460
00:15:00.232 --> 00:15:01.113
birth

461
00:15:01.133 --> 00:15:02.681
to three years of age.

462
00:15:02.701 --> 00:15:03.949
I’m trying to get rid of the echo.

463
00:15:03.969 --> 00:15:07.820
I apologize.

464
00:15:07.840 --> 00:15:09.121
We have two funding sources

465
00:15:09.141 --> 00:15:10.389
that Stephanie mentioned.

466
00:15:10.409 --> 00:15:11.891
One is the Health Resources

467
00:15:11.911 --> 00:15:14.193
Services Administration,

468
00:15:14.213 --> 00:15:15.895
Maternal Child Health,

469
00:15:15.915 --> 00:15:18.430
and that funds 59 states.

470
00:15:18.450 --> 00:15:20.766
And we also have the CDC,

471
00:15:20.786 --> 00:15:23.602
which currently funds 38 states

472
00:15:23.622 --> 00:15:27.806
and one territory.

473
00:15:27.826 --> 00:15:29.441
There's also, in some states,

474
00:15:29.461 --> 00:15:31.343
other funding that's available

475
00:15:31.363 --> 00:15:33.078
besides HRSA and CDC,

476
00:15:33.098 --> 00:15:34.914
and that may include newborn

477
00:15:34.934 --> 00:15:37.349
hearing screening fees,

478
00:15:37.369 --> 00:15:39.184
title five funding.

479
00:15:39.204 --> 00:15:41.620
But sustainability for EHDI

480
00:15:41.640 --> 00:15:44.023
right now is funded mostly

481
00:15:44.043 --> 00:15:50.029
through the federal grants.

482
00:15:50.049 --> 00:15:51.163
So this little guy,

483
00:15:51.183 --> 00:15:52.131
I'm going to take a moment

484
00:15:52.151 --> 00:15:53.799
and give you a little personal story

485
00:15:53.819 --> 00:15:55.401
here.

486
00:15:55.421 --> 00:15:57.503
This young, this little baby you may see

487
00:15:57.523 --> 00:15:59.305
running around here now is a ten year

488
00:15:59.325 --> 00:16:01.173
old is here with his mom.

489
00:16:01.193 --> 00:16:05.377
He is also my grandson.

490
00:16:05.397 --> 00:16:07.513
So the EHDI program roles

491
00:16:07.533 --> 00:16:09.281
and general responsibilities

492
00:16:09.301 --> 00:16:12.551
include tracking and surveillance.

493
00:16:12.571 --> 00:16:14.119
So as Stephanie also

494
00:16:14.139 --> 00:16:15.487
mentioned on screening

495
00:16:15.507 --> 00:16:18.457
hearing by one month of age.

496
00:16:18.477 --> 00:16:21.260
And that means that in order to,

497
00:16:21.280 --> 00:16:24.096
achieve that that goal, we really need

498
00:16:24.116 --> 00:16:27.132
to be working with hospitals,

499
00:16:27.152 --> 00:16:28.500
with midwives, home birth

500
00:16:28.520 --> 00:16:31.070
midwives, primary care providers.

501
00:16:31.090 --> 00:16:32.037
And what's interesting

502
00:16:32.057 --> 00:16:33.839
about the midwife population

503
00:16:33.859 --> 00:16:36.108
is that for many years,

504
00:16:36.128 --> 00:16:37.710
those babies were not screened,

505
00:16:37.730 --> 00:16:39.411
or they didn't come into the hospitals

506
00:16:39.431 --> 00:16:40.779
because the families

507
00:16:40.799 --> 00:16:42.247
had the babies at home

508
00:16:42.267 --> 00:16:43.849
and did not want to bring them

509
00:16:43.869 --> 00:16:44.750
into a hospital

510
00:16:44.770 --> 00:16:46.785
or pediatricians office

511
00:16:46.805 --> 00:16:48.954
or a family practice doctor.

512
00:16:48.974 --> 00:16:50.322
So many EHDI programs

513
00:16:50.342 --> 00:16:51.323
collaborate closely

514
00:16:51.343 --> 00:16:52.992
with their home birth midwives

515
00:16:53.012 --> 00:16:54.526
and have projects with them

516
00:16:54.546 --> 00:16:56.695
where they are now doing screenings,

517
00:16:56.715 --> 00:17:00.966
in the homes of the families that they birth.

518
00:17:00.986 --> 00:17:02.801
Our second goal is diagnosis

519
00:17:02.821 --> 00:17:04.503
by three months of age.

520
00:17:04.523 --> 00:17:07.272
So EHDI programs work very closely

521
00:17:07.292 --> 00:17:09.208
with our family practice doctors

522
00:17:09.228 --> 00:17:10.576
and our audiologists

523
00:17:10.596 --> 00:17:11.310
to ensure

524
00:17:11.330 --> 00:17:12.478
that those babies who

525
00:17:12.498 --> 00:17:13.479
do not pass

526
00:17:13.499 --> 00:17:15.647
or referred on a hearing screening

527
00:17:15.667 --> 00:17:17.883
are able to move on to

528
00:17:17.903 --> 00:17:21.587
a diagnostic evaluation

529
00:17:21.607 --> 00:17:22.421
and then entrance

530
00:17:22.441 --> 00:17:23.922
into early intervention.

531
00:17:23.942 --> 00:17:25.224
So once an infant

532
00:17:25.244 --> 00:17:29.094
is diagnosed with hearing differences,

533
00:17:29.114 --> 00:17:31.630
the next goal is to ensure that they’re enrolled

534
00:17:31.650 --> 00:17:33.298
an early, intervention.

535
00:17:33.318 --> 00:17:35.901
And that goal is at six months of age,

536
00:17:35.921 --> 00:17:38.170
which is a critical time period

537
00:17:38.190 --> 00:17:41.874
for infants to be receiving  services

538
00:17:41.894 --> 00:17:44.676
from either teachers of the deaf,

539
00:17:44.696 --> 00:17:45.911
providers who are speech

540
00:17:45.931 --> 00:17:48.147
and language pathologist that are trained

541
00:17:48.167 --> 00:17:49.148
with deaf and hard of hearing

542
00:17:49.168 --> 00:17:51.650
children, developmental educators

543
00:17:51.670 --> 00:17:53.052
or developmental

544
00:17:53.072 --> 00:17:54.553
early intervention specialists

545
00:17:54.573 --> 00:17:56.055
and some state

546
00:17:56.075 --> 00:18:01.193
audiologists in the educational area.

547
00:18:01.213 --> 00:18:03.062
So EHDI programs also collaborate

548
00:18:03.082 --> 00:18:05.230
very closely with their parts program

549
00:18:05.250 --> 00:18:11.236
and not parts programs.

550
00:18:11.256 --> 00:18:12.071
Collaboration

551
00:18:12.091 --> 00:18:13.372
as I've mentioned, it's

552
00:18:13.392 --> 00:18:14.673
extremely important

553
00:18:14.693 --> 00:18:17.209
across EHDI

554
00:18:17.229 --> 00:18:18.944
including early intervention, part

555
00:18:18.964 --> 00:18:20.546
C and non part C.

556
00:18:20.566 --> 00:18:22.848
And one of the goals with our

557
00:18:22.868 --> 00:18:24.450
HRSA grant right now

558
00:18:24.470 --> 00:18:26.185
is to have baseline data

559
00:18:26.205 --> 00:18:28.654
and language assessments,

560
00:18:28.674 --> 00:18:29.655
and early intervention.

561
00:18:29.675 --> 00:18:32.291
So birth to three.

562
00:18:32.311 --> 00:18:34.860
So there are a variety of ways

563
00:18:34.880 --> 00:18:37.596
that EHDI programs are beginning to work

564
00:18:37.616 --> 00:18:38.831
with part C programs.

565
00:18:38.851 --> 00:18:41.767
But it really is a collaboration between

566
00:18:41.787 --> 00:18:42.701
part C 

567
00:18:42.721 --> 00:18:44.703
and between EHDI.

568
00:18:44.723 --> 00:18:48.040
Some states have data sharing agreements.

569
00:18:48.060 --> 00:18:51.243
Some states work with one program

570
00:18:51.263 --> 00:18:52.211
on obtaining

571
00:18:52.231 --> 00:18:53.378
baseline data others

572
00:18:53.398 --> 00:18:55.414
and working with the state.

573
00:18:55.434 --> 00:18:57.583
There's a program also called

574
00:18:57.603 --> 00:18:59.985
that was originally a CDC

575
00:19:00.005 --> 00:19:02.654
special project called Odyssey.

576
00:19:02.674 --> 00:19:04.790
And that program,

577
00:19:04.810 --> 00:19:06.391
now known as the Early Language

578
00:19:06.411 --> 00:19:07.726
Outcome Program,

579
00:19:07.746 --> 00:19:11.530
is working with 11 program states,

580
00:19:11.550 --> 00:19:12.064
to obtain

581
00:19:12.084 --> 00:19:13.499
some of the language

582
00:19:13.519 --> 00:19:14.066
assessment,

583
00:19:14.086 --> 00:19:16.268
developmental assessment data,

584
00:19:16.288 --> 00:19:19.071
which has been really helpful to,

585
00:19:19.091 --> 00:19:20.706
start this process.

586
00:19:20.726 --> 00:19:22.608
Other states have

587
00:19:22.628 --> 00:19:24.910
work closely with their parts programs

588
00:19:24.930 --> 00:19:28.013
in order to obtain that information,

589
00:19:28.033 --> 00:19:30.315
but it's collaboration on both sides

590
00:19:30.335 --> 00:19:32.050
It’s so critical to obtain

591
00:19:32.070 --> 00:19:34.453
this information.

592
00:19:34.473 --> 00:19:36.221
Family engagement.

593
00:19:36.241 --> 00:19:37.789
Family based organizations

594
00:19:37.809 --> 00:19:40.058
are critical to the success EHDI

595
00:19:40.078 --> 00:19:42.027
as well.

596
00:19:42.047 --> 00:19:43.162
Parent leaders,

597
00:19:43.182 --> 00:19:44.196
that parent to parent

598
00:19:44.216 --> 00:19:46.532
support, parent engagement,

599
00:19:46.552 --> 00:19:49.067
and family activities is

600
00:19:49.087 --> 00:19:51.370
an essential piece of success

601
00:19:51.390 --> 00:19:52.671
in EHDI programs.

602
00:19:52.691 --> 00:19:54.173
So introducing families

603
00:19:54.193 --> 00:19:56.909
early on [unintelligible]

604
00:19:56.929 --> 00:19:59.711
the diagnosis and then,

605
00:19:59.731 --> 00:20:00.679
going into early

606
00:20:00.699 --> 00:20:03.949
and rolling into early intervention is really helpful

607
00:20:03.969 --> 00:20:06.518
to have those families support,

608
00:20:06.538 --> 00:20:09.721
organizations in place.

609
00:20:09.741 --> 00:20:12.958
Another goal of the HRSA

610
00:20:12.978 --> 00:20:14.326
project, program

611
00:20:14.346 --> 00:20:17.596
is for monitoring newborns with high risk

612
00:20:17.616 --> 00:20:21.166
factors of developing changes in hearing.

613
00:20:21.186 --> 00:20:22.601
And that's because,

614
00:20:22.621 --> 00:20:24.303
as Stephanie mentioned,

615
00:20:24.323 --> 00:20:25.237
2 to 3 babies

616
00:20:25.257 --> 00:20:28.740
per thousand currently are diagnosed as,

617
00:20:28.760 --> 00:20:30.676
with hearing differences.

618
00:20:30.696 --> 00:20:33.912
But between six months of age and,

619
00:20:33.932 --> 00:20:37.883
five years of age, another 3 to 6 times

620
00:20:37.903 --> 00:20:39.484
per thousand

621
00:20:39.504 --> 00:20:41.653
children could also be diagnosed with

622
00:20:41.673 --> 00:20:45.457
an acquired hearing loss.

623
00:20:45.477 --> 00:20:46.992
So monitoring programs

624
00:20:47.012 --> 00:20:48.160
we’re all working

625
00:20:48.180 --> 00:20:49.328
plus are trying to work

626
00:20:49.348 --> 00:20:52.731
with other agencies to help facilitate

627
00:20:52.751 --> 00:20:56.301
those screening processes.

628
00:20:56.321 --> 00:20:58.136
Deaf and hard of hearing 

629
00:20:58.156 --> 00:20:59.071
mentoring programs

630
00:20:59.091 --> 00:21:02.174
are also critical

631
00:21:02.194 --> 00:21:04.710
for supporting families.

632
00:21:04.730 --> 00:21:06.345
Family retreats, parent

633
00:21:06.365 --> 00:21:08.380
and professional trainings.

634
00:21:08.400 --> 00:21:11.383
And this picture is of an EHDI leadership

635
00:21:11.403 --> 00:21:12.451
training opportunity

636
00:21:12.471 --> 00:21:14.386
that happened in 2018.

637
00:21:14.406 --> 00:21:15.520
That was amazing.

638
00:21:15.540 --> 00:21:17.389
And it's really wonderful

639
00:21:17.409 --> 00:21:23.128
because it really is about EHDI together.

640
00:21:23.148 --> 00:21:25.264
Collaboration with partners continued.

641
00:21:25.284 --> 00:21:29.501
So EHDI website development, EHDI programs,

642
00:21:29.521 --> 00:21:30.402
have websites

643
00:21:30.422 --> 00:21:32.671
that they're updating as things change

644
00:21:32.691 --> 00:21:34.673
and as requirements change,

645
00:21:34.693 --> 00:21:35.374
EHDI programs

646
00:21:35.394 --> 00:21:35.741
often

647
00:21:35.761 --> 00:21:36.441
play a role

648
00:21:36.461 --> 00:21:39.244
in supporting emerging initiatives

649
00:21:39.264 --> 00:21:40.245
such as

650
00:21:40.265 --> 00:21:42.314
screening for congenital 

651
00:21:42.334 --> 00:21:43.882
cytomegalovirus

652
00:21:43.902 --> 00:21:45.784
and early periodic screenings

653
00:21:45.804 --> 00:21:46.385
for children

654
00:21:46.405 --> 00:21:49.621
between birth and three years of age.

655
00:21:49.641 --> 00:21:51.623
EHDI advisory councils, every state

656
00:21:51.643 --> 00:21:54.793
and territory has an EHDI advisory council.

657
00:21:54.813 --> 00:21:57.763
And oftentimes we have family committees 

658
00:21:57.783 --> 00:22:00.065
so that families are able to give

659
00:22:00.085 --> 00:22:02.401
feedback on,

660
00:22:02.421 --> 00:22:05.203
website information on resources.

661
00:22:05.223 --> 00:22:07.139
It's extremely important

662
00:22:07.159 --> 00:22:08.473
to have that family member

663
00:22:08.493 --> 00:22:09.975
with lived experience

664
00:22:09.995 --> 00:22:15.147
and the family voice at the table.

665
00:22:15.167 --> 00:22:16.448
Supporting EHDI programs.

666
00:22:16.468 --> 00:22:18.350
As Stephanie mentioned, directors

667
00:22:18.370 --> 00:22:20.252
of speech and hearing programs

668
00:22:20.272 --> 00:22:21.486
at state health and welfare

669
00:22:21.506 --> 00:22:25.857
agencies, fondly known as DSHPSHWA or DIPS

670
00:22:25.877 --> 00:22:27.793
Representatives serve on several

671
00:22:27.813 --> 00:22:28.927
national committees,

672
00:22:28.947 --> 00:22:30.629
including the Joint

673
00:22:30.649 --> 00:22:34.533
Commission on Infant Hearing, Audiology

674
00:22:34.553 --> 00:22:36.101
Quality Consortium,

675
00:22:36.121 --> 00:22:38.770
Parent Choice Committees,

676
00:22:38.790 --> 00:22:41.239
and the National Hearing Assessment

677
00:22:41.259 --> 00:22:43.075
and Measurement, National Center for Hearing

678
00:22:43.095 --> 00:22:44.343
and Assessment and Measurement.

679
00:22:44.363 --> 00:22:45.644
NCHAM

680
00:22:45.664 --> 00:22:49.848
is also a big supporter of the EHDI system

681
00:22:49.868 --> 00:22:52.551
of care and of having moved EHDI programs forward

682
00:22:52.571 --> 00:22:56.288
for it in its last 25 years.

683
00:22:56.308 --> 00:22:58.757
The current EHDI national network

684
00:22:58.777 --> 00:23:01.460
is The Implementation and Change Center

685
00:23:01.480 --> 00:23:03.195
at the Beacon Center,

686
00:23:03.215 --> 00:23:04.830
the Family Leadership Language

687
00:23:04.850 --> 00:23:07.165
and Learning Center, and the FL3

688
00:23:07.185 --> 00:23:12.637
and the Provider Education Center PEC.

689
00:23:12.657 --> 00:23:14.106
So thank you so much.

690
00:23:14.126 --> 00:23:17.909
And I.

691
00:23:17.929 --> 00:23:19.544
So I,

692
00:23:19.564 --> 00:23:25.534
I just.

693
00:23:25.554 --> 00:23:27.652


694
00:23:27.672 --> 00:23:29.588
Hello everyone I'm Lisa Kovacs

695
00:23:29.608 --> 00:23:31.356
I'm the director of programs

696
00:23:31.376 --> 00:23:33.325
for Hands and Voices headquarters.

697
00:23:33.345 --> 00:23:34.693
And I'm on the core management

698
00:23:34.713 --> 00:23:36.061
team for the family

699
00:23:36.081 --> 00:23:37.262
leadership and Language

700
00:23:37.282 --> 00:23:38.263
and Learning Center.

701
00:23:38.283 --> 00:23:40.432
You'll hear it called FL3.

702
00:23:40.452 --> 00:23:42.334
How many parents or families do we have

703
00:23:42.354 --> 00:23:44.503
in the audience?

704
00:23:44.523 --> 00:23:45.570
Awesome.

705
00:23:45.590 --> 00:23:46.271
Look at that.

706
00:23:46.291 --> 00:23:48.407
Guys, there's lots of parents here today.

707
00:23:48.427 --> 00:23:49.207
Welcome.

708
00:23:49.227 --> 00:23:50.108
If this is your first

709
00:23:50.128 --> 00:23:50.842
EHDI conference,

710
00:23:50.862 --> 00:23:57.282
we're so happy to have you here.

711
00:23:57.302 --> 00:23:59.551
So I'm here to talk a little bit,

712
00:23:59.571 --> 00:24:02.621
about the integral role that families

713
00:24:02.641 --> 00:24:05.190
support plays in the EHDI system.

714
00:24:05.210 --> 00:24:06.591
And already

715
00:24:06.611 --> 00:24:08.026
Stephanie and Linda

716
00:24:08.046 --> 00:24:09.995
both talked about that,

717
00:24:10.015 --> 00:24:12.063
and I can't think of a better way

718
00:24:12.083 --> 00:24:13.498
to talk about

719
00:24:13.518 --> 00:24:15.667
why family support is so important

720
00:24:15.687 --> 00:24:18.703
than to tell you a little story.

721
00:24:18.723 --> 00:24:22.073
I there was a,

722
00:24:22.093 --> 00:24:22.841
research study

723
00:24:22.861 --> 00:24:24.943
that was done out of Western University

724
00:24:24.963 --> 00:24:26.845
where they interviewed parents

725
00:24:26.865 --> 00:24:30.282
about their experience receiving family

726
00:24:30.302 --> 00:24:32.017
to family support.

727
00:24:32.037 --> 00:24:35.220
And this quote, came from a parent

728
00:24:35.240 --> 00:24:36.588
that said

729
00:24:36.608 --> 00:24:39.991
“I was hanging in a bit of a limbo zone.

730
00:24:40.011 --> 00:24:41.059
So it was like,

731
00:24:41.079 --> 00:24:42.627
we know there's something here.

732
00:24:42.647 --> 00:24:44.729
We just don't know what exactly

733
00:24:44.749 --> 00:24:46.231
what extent it is.

734
00:24:46.251 --> 00:24:50.502
We had several, ABR tests.”

735
00:24:50.522 --> 00:24:52.471
The mom said “I was an emotional wreck

736
00:24:52.491 --> 00:24:54.673
every time we had an audiology

737
00:24:54.693 --> 00:24:56.675
ABR appointment,

738
00:24:56.695 --> 00:24:58.276
and we had several of them

739
00:24:58.296 --> 00:25:00.245
to get the complete picture.

740
00:25:00.265 --> 00:25:01.179
These appointments

741
00:25:01.199 --> 00:25:03.014
were really hard on me.

742
00:25:03.034 --> 00:25:04.182
It feels like you're reaching

743
00:25:04.202 --> 00:25:05.150
into the darkness

744
00:25:05.170 --> 00:25:07.385
and you don't know what exists out there,

745
00:25:07.405 --> 00:25:09.120
what it's going to be like,

746
00:25:09.140 --> 00:25:10.789
and if you're just desperate

747
00:25:10.809 --> 00:25:11.590
to find a bridge

748
00:25:11.610 --> 00:25:12.624
to something that will help

749
00:25:12.644 --> 00:25:14.593
you feel more anchored.

750
00:25:14.613 --> 00:25:16.628
Once I was connected to another parent,

751
00:25:16.648 --> 00:25:18.697
they gave me something to hold on to.

752
00:25:18.717 --> 00:25:20.365
It gave me a sense of grounding

753
00:25:20.385 --> 00:25:21.399
and then anchoring

754
00:25:21.419 --> 00:25:24.069
within this new normal for our family.”

755
00:25:24.089 --> 00:25:25.403
So that was one parent

756
00:25:25.423 --> 00:25:26.771
sharing their experience

757
00:25:26.791 --> 00:25:27.639
of what it was like

758
00:25:27.659 --> 00:25:28.740
once they were connected

759
00:25:28.760 --> 00:25:32.477
to another family.

760
00:25:32.497 --> 00:25:35.046
So here is some evidence that supports

761
00:25:35.066 --> 00:25:36.014
the significance

762
00:25:36.034 --> 00:25:39.084
of family support within the EHDI system.

763
00:25:39.104 --> 00:25:40.418
The Joint Committee on Infant

764
00:25:40.438 --> 00:25:41.853
Hearing has identified

765
00:25:41.873 --> 00:25:43.488
parent to parent support

766
00:25:43.508 --> 00:25:45.257
as an important component

767
00:25:45.277 --> 00:25:46.725
of EHDI programs for children

768
00:25:46.745 --> 00:25:48.894
who are deaf or hard of hearing.

769
00:25:48.914 --> 00:25:51.062
The EHDI legislation states

770
00:25:51.082 --> 00:25:52.931
referrals from EHDI programs

771
00:25:52.951 --> 00:25:54.399
should include referrals

772
00:25:54.419 --> 00:25:56.668
to family support

773
00:25:56.688 --> 00:25:57.969
and through the HRSA

774
00:25:57.989 --> 00:26:00.338
funding that's already been mentioned.

775
00:26:00.358 --> 00:26:03.008
EHDI programs are required to provide

776
00:26:03.028 --> 00:26:05.010
funding that

777
00:26:05.030 --> 00:26:07.812
that it supports family engagement,

778
00:26:07.832 --> 00:26:09.114
family leadership and family

779
00:26:09.134 --> 00:26:10.782
support in the program.

780
00:26:10.802 --> 00:26:11.516
That includes

781
00:26:11.536 --> 00:26:13.451
designating a point person

782
00:26:13.471 --> 00:26:16.721
to serve as a family engagement liaison.

783
00:26:16.741 --> 00:26:19.457
A minimum of 20% of their are awarded

784
00:26:19.477 --> 00:26:21.059
funding to family support

785
00:26:21.079 --> 00:26:23.361
and engagement activities.

786
00:26:23.381 --> 00:26:25.564
So the system has really grown

787
00:26:25.584 --> 00:26:27.165
over the years to where we are

788
00:26:27.185 --> 00:26:27.933
at this point,

789
00:26:27.953 --> 00:26:29.734
where there's true evidence of why

790
00:26:29.754 --> 00:26:33.939
family support is so important.

791
00:26:33.959 --> 00:26:34.506
So my

792
00:26:34.526 --> 00:26:38.543
introduction into the EHDI system,

793
00:26:38.563 --> 00:26:40.445
Stephanie had mentioned the,

794
00:26:40.465 --> 00:26:42.280
history of the universal

795
00:26:42.300 --> 00:26:43.515
newborn hearing screening.

796
00:26:43.535 --> 00:26:44.950
And as a parent myself,

797
00:26:44.970 --> 00:26:46.151
I can tell you

798
00:26:46.171 --> 00:26:48.820
that I am indebted to those pioneers

799
00:26:48.840 --> 00:26:50.188
that started universal

800
00:26:50.208 --> 00:26:50.889
newborn hearing

801
00:26:50.909 --> 00:26:52.123
screening.

802
00:26:52.143 --> 00:26:54.759
In my home state of Indiana in 2000,

803
00:26:54.779 --> 00:26:56.861
they had just passed that mandate,

804
00:26:56.881 --> 00:26:57.796
and I had twins

805
00:26:57.816 --> 00:27:00.498
that were born at 27 weeks gestation.

806
00:27:00.518 --> 00:27:02.968
And spent 88 days in the NICU.

807
00:27:02.988 --> 00:27:04.903
And they received newborn

808
00:27:04.923 --> 00:27:08.139
hearing screening in June of 2000.

809
00:27:08.159 --> 00:27:09.341
And my son,

810
00:27:09.361 --> 00:27:10.075
referred on this

811
00:27:10.095 --> 00:27:12.043
newborn hearing screening.

812
00:27:12.063 --> 00:27:14.446
He's thriving now as a 25 year

813
00:27:14.466 --> 00:27:15.547
old young adult,

814
00:27:15.567 --> 00:27:17.649
but I just can't imagine what,

815
00:27:17.669 --> 00:27:19.050
our journey might have looked like

816
00:27:19.070 --> 00:27:21.019
if he had not had that universal

817
00:27:21.039 --> 00:27:23.455
newborn hearing screening.

818
00:27:23.475 --> 00:27:25.090
When I first heard about EHDI,

819
00:27:25.110 --> 00:27:28.093
I thought of EHDI as a program.

820
00:27:28.113 --> 00:27:29.694
And then I learned quickly

821
00:27:29.714 --> 00:27:32.230
that EHDI is an entire system.

822
00:27:32.250 --> 00:27:34.799
My family system of care included

823
00:27:34.819 --> 00:27:36.067
audiologists,

824
00:27:36.087 --> 00:27:39.671
neonatal staff, otolaryngologists, 

825
00:27:39.691 --> 00:27:41.606
developmental pediatrician,

826
00:27:41.626 --> 00:27:43.241
a pediatrician,

827
00:27:43.261 --> 00:27:47.812
EI providers, family support organization,

828
00:27:47.832 --> 00:27:49.314
and deaf and hard of hearing adults

829
00:27:49.334 --> 00:27:50.815
with lived experience

830
00:27:50.835 --> 00:27:52.484
and experience of other families

831
00:27:52.504 --> 00:27:54.486
who were on the journey before me.

832
00:27:54.506 --> 00:27:56.721
and along they walked alongside us.

833
00:27:56.741 --> 00:27:58.123
So you in this room

834
00:27:58.143 --> 00:28:00.291
may fall into one of those categories

835
00:28:00.311 --> 00:28:01.459
and recognize

836
00:28:01.479 --> 00:28:03.395
what an integral role you play.

837
00:28:03.415 --> 00:28:07.165
in the EHDI system.

838
00:28:07.185 --> 00:28:08.967
So when we consider

839
00:28:08.987 --> 00:28:10.101
why is it so important

840
00:28:10.121 --> 00:28:10.735
that families

841
00:28:10.755 --> 00:28:13.938
receive support in the EHDI system?

842
00:28:13.958 --> 00:28:15.907
We have to remember for many families,

843
00:28:15.927 --> 00:28:17.442
the timing of when they enter

844
00:28:17.462 --> 00:28:18.643
the EHDI system

845
00:28:18.663 --> 00:28:20.145
is typically at a time

846
00:28:20.165 --> 00:28:22.881
when they're having many new experiences.

847
00:28:22.901 --> 00:28:25.150
They may be a first time parent.

848
00:28:25.170 --> 00:28:26.351
They may have never known

849
00:28:26.371 --> 00:28:28.753
anyone who is deaf or hard of hearing.

850
00:28:28.773 --> 00:28:29.654
The information

851
00:28:29.674 --> 00:28:32.624
they receive is also new to them.

852
00:28:32.644 --> 00:28:33.591
And most importantly,

853
00:28:33.611 --> 00:28:35.560
there's a real urgency

854
00:28:35.580 --> 00:28:36.761
to be moving forward

855
00:28:36.781 --> 00:28:39.531
because of language acquisition.

856
00:28:39.551 --> 00:28:41.399
I recently heard a story from

857
00:28:41.419 --> 00:28:43.601
a mom on a webinar that she shared,

858
00:28:43.621 --> 00:28:45.403
looking back on her journey,

859
00:28:45.423 --> 00:28:48.673
she realized that she was so stressed

860
00:28:48.693 --> 00:28:51.109
during these early days with her child,

861
00:28:51.129 --> 00:28:52.343
newly identified

862
00:28:52.363 --> 00:28:53.812
as deaf or hard of hearing,

863
00:28:53.832 --> 00:28:55.080
that it really interfered

864
00:28:55.100 --> 00:28:57.916
with the bonding with her baby.

865
00:28:57.936 --> 00:29:00.051
And at that time,

866
00:29:00.071 --> 00:29:01.052
if she would have had

867
00:29:01.072 --> 00:29:02.320
the family support system

868
00:29:02.340 --> 00:29:04.322
that is established today,

869
00:29:04.342 --> 00:29:05.457
she thinks that would have looked

870
00:29:05.477 --> 00:29:06.491
very differently.

871
00:29:06.511 --> 00:29:07.926
Someone else telling her

872
00:29:07.946 --> 00:29:09.828
it's going to be okay, I've done this.

873
00:29:09.848 --> 00:29:12.097
You can do this too.

874
00:29:12.117 --> 00:29:12.330
This

875
00:29:12.350 --> 00:29:14.032
mom is highly resourced

876
00:29:14.052 --> 00:29:16.201
and so I challenge us all in this room

877
00:29:16.221 --> 00:29:17.569
to think about

878
00:29:17.589 --> 00:29:18.670
what about the families

879
00:29:18.690 --> 00:29:20.538
that are not so resourced

880
00:29:20.558 --> 00:29:22.107
and they're struggling.

881
00:29:22.127 --> 00:29:27.011
They need family support more than ever.

882
00:29:27.031 --> 00:29:29.848
So where do families find support?

883
00:29:29.868 --> 00:29:30.648
It's all of us.

884
00:29:30.668 --> 00:29:32.016
It's all of us in this room

885
00:29:32.036 --> 00:29:33.384
that needs to provide support,

886
00:29:33.404 --> 00:29:36.087
not just family support providers.

887
00:29:36.107 --> 00:29:39.090
And again, why do they need support?

888
00:29:39.110 --> 00:29:39.958
The families

889
00:29:39.978 --> 00:29:42.460
in the EHDI system are diverse.

890
00:29:42.480 --> 00:29:43.061
They're diverse

891
00:29:43.081 --> 00:29:45.463
in the decisions that they make.

892
00:29:45.483 --> 00:29:49.567
And these decisions are very complex.

893
00:29:49.587 --> 00:29:51.536
Families need the support of many

894
00:29:51.556 --> 00:29:53.538
to be able to,

895
00:29:53.558 --> 00:29:54.038
learn

896
00:29:54.058 --> 00:29:55.673
what's going to work for their child

897
00:29:55.693 --> 00:29:57.041
and their family.

898
00:29:57.061 --> 00:29:59.644
Access to comprehensive

899
00:29:59.664 --> 00:30:01.813
and coordinated family support

900
00:30:01.833 --> 00:30:03.848
increases the family's knowledge

901
00:30:03.868 --> 00:30:04.783
and improves

902
00:30:04.803 --> 00:30:05.950
family and child

903
00:30:05.970 --> 00:30:07.919
well-being, and empowerment

904
00:30:07.939 --> 00:30:10.722
that those, then ultimately promote family

905
00:30:10.742 --> 00:30:12.090
engagement and language

906
00:30:12.110 --> 00:30:14.325
and communication.

907
00:30:14.345 --> 00:30:17.395
I'd like to recognize Doctor White, Karl

908
00:30:17.415 --> 00:30:19.497
for his early and ongoing commitment

909
00:30:19.517 --> 00:30:20.465
to family support,

910
00:30:20.485 --> 00:30:21.466
being an integral part

911
00:30:21.486 --> 00:30:22.934
of the EHDI system.

912
00:30:22.954 --> 00:30:25.370
As you can see from this slide,

913
00:30:25.390 --> 00:30:27.438
families need support from all of us.

914
00:30:27.458 --> 00:30:30.341
And Karl, you were the pioneer in that.

915
00:30:30.361 --> 00:30:31.743
We had a session this morning

916
00:30:31.763 --> 00:30:33.411
just for parent leaders.

917
00:30:33.431 --> 00:30:34.345
And Janet DeGeorges

918
00:30:34.365 --> 00:30:35.713
the executive director of Hands

919
00:30:35.733 --> 00:30:36.915
and Voices mentioned that

920
00:30:36.935 --> 00:30:38.383
at her first EHDI conference,

921
00:30:38.403 --> 00:30:40.852
she was at the first 25 years ago.

922
00:30:40.872 --> 00:30:42.020
And they asked how many parents

923
00:30:42.040 --> 00:30:42.821
were in the

924
00:30:42.841 --> 00:30:45.190
room and there were two.

925
00:30:45.210 --> 00:30:46.324
I believe last year,

926
00:30:46.344 --> 00:30:47.759
parents were like the third

927
00:30:47.779 --> 00:30:48.693
highest or fourth

928
00:30:48.713 --> 00:30:51.496
highest percentage of attendees

929
00:30:51.516 --> 00:30:52.931
at the EHDI conference last year.

930
00:30:52.951 --> 00:30:54.465
And I don't know what the registration

931
00:30:54.485 --> 00:30:57.902
numbers look like this year.

932
00:30:57.922 --> 00:30:59.838
So when we think about,

933
00:30:59.858 --> 00:31:02.240
where parents are in the EHDI system,

934
00:31:02.260 --> 00:31:04.209
some of them start out,

935
00:31:04.229 --> 00:31:05.443
most of us all start out

936
00:31:05.463 --> 00:31:06.845
just wanting to help our own child.

937
00:31:06.865 --> 00:31:08.713
That certainly is what motivated me

938
00:31:08.733 --> 00:31:10.882
to get involved in the EHDI system.

939
00:31:10.902 --> 00:31:13.318
And then some of them move into wanting

940
00:31:13.338 --> 00:31:16.421
to provide support to other parents,

941
00:31:16.441 --> 00:31:17.589
and then eventually

942
00:31:17.609 --> 00:31:19.157
we see them being leaders

943
00:31:19.177 --> 00:31:20.124
in the systems

944
00:31:20.144 --> 00:31:21.526
of the states and territories

945
00:31:21.546 --> 00:31:22.794
where they live.

946
00:31:22.814 --> 00:31:24.395
And so we need to look at

947
00:31:24.415 --> 00:31:26.297
where are the families,

948
00:31:26.317 --> 00:31:27.432
on this continuum,

949
00:31:27.452 --> 00:31:28.399
and what kind of support

950
00:31:28.419 --> 00:31:29.667
do we need to provide them

951
00:31:29.687 --> 00:31:31.502
in their important role

952
00:31:31.522 --> 00:31:36.507
in family support in the EHDI system?

953
00:31:36.527 --> 00:31:38.309
So Hands and Voices,

954
00:31:38.329 --> 00:31:39.310
has been a partner

955
00:31:39.330 --> 00:31:40.678
and leading the way in family

956
00:31:40.698 --> 00:31:41.412
support efforts

957
00:31:41.432 --> 00:31:43.715
in the EHDI system for many years.

958
00:31:43.735 --> 00:31:44.582
Hands and Voices

959
00:31:44.602 --> 00:31:45.216
was first

960
00:31:45.236 --> 00:31:48.553
established in Colorado in 1996,

961
00:31:48.573 --> 00:31:49.687
where a parent led

962
00:31:49.707 --> 00:31:51.456
a family based organization

963
00:31:51.476 --> 00:31:55.159
with 43 chapters in the US and Canada.

964
00:31:55.179 --> 00:31:56.561
We’re a diverse community

965
00:31:56.581 --> 00:31:58.763
that supports a family’s right

966
00:31:58.783 --> 00:32:00.265
to make decisions that work

967
00:32:00.285 --> 00:32:02.533
for their child and family.

968
00:32:02.553 --> 00:32:05.169
We believe there is not one communication

969
00:32:05.189 --> 00:32:06.804
or language approach

970
00:32:06.824 --> 00:32:09.040
that works for all children.

971
00:32:09.060 --> 00:32:11.209
Hands and Voices has been the recipient

972
00:32:11.229 --> 00:32:11.943
of the FL3

973
00:32:11.963 --> 00:32:12.877
funding

974
00:32:12.897 --> 00:32:16.547
since it was established in 2017,

975
00:32:16.567 --> 00:32:17.015
and the FL3

976
00:32:17.035 --> 00:32:19.350
center is here to support

977
00:32:19.370 --> 00:32:21.853
all of you, including state and territory

978
00:32:21.873 --> 00:32:22.820
EHDI programs

979
00:32:22.840 --> 00:32:24.522
and their family leaders

980
00:32:24.542 --> 00:32:27.258
through, ensuring that we're building

981
00:32:27.278 --> 00:32:28.826
capacity of family leaders

982
00:32:28.846 --> 00:32:30.461
across the country

983
00:32:30.481 --> 00:32:35.700
and also engaging in family support.

984
00:32:35.720 --> 00:32:36.834
So whatever your role

985
00:32:36.854 --> 00:32:37.969
is in the EHDI system,

986
00:32:37.989 --> 00:32:39.070
the FL3 center

987
00:32:39.090 --> 00:32:40.071
and Hands of Voices

988
00:32:40.091 --> 00:32:41.839
is here to support you.

989
00:32:41.859 --> 00:32:42.807
And I'll just close

990
00:32:42.827 --> 00:32:45.843
with one final family story,

991
00:32:45.863 --> 00:32:46.978
the mom wrote,

992
00:32:46.998 --> 00:32:47.645
“For years,

993
00:32:47.665 --> 00:32:49.447
I was worried about my son's ability

994
00:32:49.467 --> 00:32:50.315
to learn language

995
00:32:50.335 --> 00:32:52.617
and communicate with his friends

996
00:32:52.637 --> 00:32:54.419
and what his future would hold.

997
00:32:54.439 --> 00:32:56.354
Today, I received a note with a photo

998
00:32:56.374 --> 00:32:58.289
from his third grade teacher.

999
00:32:58.309 --> 00:33:00.325
My son was the guest reader

1000
00:33:00.345 --> 00:33:01.759
for a kindergarten class.

1001
00:33:01.779 --> 00:33:02.560
As a reward

1002
00:33:02.580 --> 00:33:03.461
for being the top

1003
00:33:03.481 --> 00:33:04.996
reading student in his third

1004
00:33:05.016 --> 00:33:07.198
grade mainstream class.

1005
00:33:07.218 --> 00:33:08.666
The smile on his face

1006
00:33:08.686 --> 00:33:10.902
and the picture showed his confidence

1007
00:33:10.922 --> 00:33:12.570
and happiness.

1008
00:33:12.590 --> 00:33:13.905
It's moments like these

1009
00:33:13.925 --> 00:33:15.640
that make all the years of time

1010
00:33:15.660 --> 00:33:16.240
and energy

1011
00:33:16.260 --> 00:33:19.344
supporting him worth every single minute.”

1012
00:33:19.364 --> 00:33:21.212
So it's stories like these

1013
00:33:21.232 --> 00:33:22.747
that are the ultimate outcome

1014
00:33:22.767 --> 00:33:24.015
of the EHDI system.

1015
00:33:24.035 --> 00:33:25.717
So thank you for the role

1016
00:33:25.737 --> 00:33:27.285
that you play in the EHDI system

1017
00:33:27.305 --> 00:33:33.275
and have a great conference.

1018
00:33:33.295 --> 00:33:39.764


1019
00:33:39.784 --> 00:33:41.165
Good afternoon everyone.

1020
00:33:41.185 --> 00:33:42.700
My name is Sharon Walsh,

1021
00:33:42.720 --> 00:33:43.368
and I'm here

1022
00:33:43.388 --> 00:33:44.502
representing

1023
00:33:44.522 --> 00:33:47.171
two of the early childhood programs

1024
00:33:47.191 --> 00:33:49.640
funded under special education

1025
00:33:49.660 --> 00:33:51.042
in the Department of Ed.

1026
00:33:51.062 --> 00:33:53.444
One is called the ECTA

1027
00:33:53.464 --> 00:33:55.046
and the other is the DaSy Center.

1028
00:33:55.066 --> 00:33:56.748
And both of them are listed

1029
00:33:56.768 --> 00:33:59.617
on this slide as are the web pages.

1030
00:33:59.637 --> 00:34:02.253
I'm pleased to say that we have had both

1031
00:34:02.273 --> 00:34:03.688
those centers have had

1032
00:34:03.708 --> 00:34:05.289
a great collaborative efforts

1033
00:34:05.309 --> 00:34:07.458
over the last many years,

1034
00:34:07.478 --> 00:34:08.860
with both NCHAM

1035
00:34:08.880 --> 00:34:10.595
and with Hands and Voices,

1036
00:34:10.615 --> 00:34:12.730
and we have an exciting resource

1037
00:34:12.750 --> 00:34:14.232
to introduce here at the conference,

1038
00:34:14.252 --> 00:34:16.901
which we have a session on tomorrow.

1039
00:34:16.921 --> 00:34:18.669
My goal right now

1040
00:34:18.689 --> 00:34:21.372
is to try to stick to my time frame.

1041
00:34:21.392 --> 00:34:22.040
I want you to know

1042
00:34:22.060 --> 00:34:24.342
that every single person before me

1043
00:34:24.362 --> 00:34:25.610
kept right to the minute.

1044
00:34:25.630 --> 00:34:27.345
So I have quite a challenge here.

1045
00:34:27.365 --> 00:34:29.614
See if I can do it.

1046
00:34:29.634 --> 00:34:30.548
I'm going to talk a little

1047
00:34:30.568 --> 00:34:31.416
bit about what

1048
00:34:31.436 --> 00:34:33.551
the Part C program is,

1049
00:34:33.571 --> 00:34:34.318
and many of you

1050
00:34:34.338 --> 00:34:35.753
are probably very familiar with it,

1051
00:34:35.773 --> 00:34:37.121
but give you some

1052
00:34:37.141 --> 00:34:38.256
some background tips,

1053
00:34:38.276 --> 00:34:40.491
some things about the collaboration

1054
00:34:40.511 --> 00:34:41.159
and then just share

1055
00:34:41.179 --> 00:34:43.594
a couple of resources.

1056
00:34:43.614 --> 00:34:44.429
Part C,

1057
00:34:44.449 --> 00:34:45.897
how many of you are very familiar

1058
00:34:45.917 --> 00:34:48.733
with the part C early intervention? Great.

1059
00:34:48.753 --> 00:34:49.901
Oh, that's so good.

1060
00:34:49.921 --> 00:34:50.201
Okay.

1061
00:34:50.221 --> 00:34:51.536
So Part C

1062
00:34:51.556 --> 00:34:53.071
or early intervention

1063
00:34:53.091 --> 00:34:53.905
is probably called

1064
00:34:53.925 --> 00:34:55.907
something different in your state.

1065
00:34:55.927 --> 00:34:57.508
It has a different name

1066
00:34:57.528 --> 00:34:59.143
in every single state.

1067
00:34:59.163 --> 00:35:00.912
And as my colleague Linda said,

1068
00:35:00.932 --> 00:35:02.980
we always say that about Part C,

1069
00:35:03.000 --> 00:35:05.950
if you know one Part C system,

1070
00:35:05.970 --> 00:35:07.752
you know, one Part C state system,

1071
00:35:07.772 --> 00:35:09.320
and that's all. It is,

1072
00:35:09.340 --> 00:35:11.022
a voluntary program.

1073
00:35:11.042 --> 00:35:11.622
So states

1074
00:35:11.642 --> 00:35:13.624
are not required to participate.

1075
00:35:13.644 --> 00:35:15.493
But if they do, they receive a grant

1076
00:35:15.513 --> 00:35:17.895
and they must follow all the

1077
00:35:17.915 --> 00:35:20.164
rules and requirements and regulations

1078
00:35:20.184 --> 00:35:21.499
that are attached to that.

1079
00:35:21.519 --> 00:35:22.733
So here's a couple of things

1080
00:35:22.753 --> 00:35:24.502
to make sure you know,

1081
00:35:24.522 --> 00:35:26.237
whether you are at the state level,

1082
00:35:26.257 --> 00:35:27.605
a family member

1083
00:35:27.625 --> 00:35:30.141
at the local community level.

1084
00:35:30.161 --> 00:35:32.877
States have different lead agencies.

1085
00:35:32.897 --> 00:35:34.479
Unlike many federal programs,

1086
00:35:34.499 --> 00:35:37.181
they usually go straight in a line.

1087
00:35:37.201 --> 00:35:38.683
In the Part C program,

1088
00:35:38.703 --> 00:35:40.151
you could be in a state

1089
00:35:40.171 --> 00:35:42.587
where health is your lead agency.

1090
00:35:42.607 --> 00:35:43.521
You could be sitting right

1091
00:35:43.541 --> 00:35:45.289
next door to the EHDI program.

1092
00:35:45.309 --> 00:35:47.425
It could be developmental disabilities,

1093
00:35:47.445 --> 00:35:49.527
could be the education department.

1094
00:35:49.547 --> 00:35:51.362
So first thing, of course, is to find out

1095
00:35:51.382 --> 00:35:53.231
who's your lead agency.

1096
00:35:53.251 --> 00:35:54.732
And that agency receives

1097
00:35:54.752 --> 00:35:55.933
the federal funds,

1098
00:35:55.953 --> 00:35:57.935
which, like all federal programs,

1099
00:35:57.955 --> 00:36:00.471
if I can say are underfunded.

1100
00:36:00.491 --> 00:36:01.739
So the job of the Part

1101
00:36:01.759 --> 00:36:02.106
C lead

1102
00:36:02.126 --> 00:36:04.809
agency is to make sure they incorporate

1103
00:36:04.829 --> 00:36:06.377
other funding sources

1104
00:36:06.397 --> 00:36:08.312
to make the program work.

1105
00:36:08.332 --> 00:36:10.481
But this is one of the programs that,

1106
00:36:10.501 --> 00:36:11.649
as an EHDI  person,

1107
00:36:11.669 --> 00:36:13.050
you will most want

1108
00:36:13.070 --> 00:36:14.952
to work on collaboration with,

1109
00:36:14.972 --> 00:36:16.921
and vice versa.

1110
00:36:16.941 --> 00:36:18.623
The other thing that varies,

1111
00:36:18.643 --> 00:36:19.857
which is why you want to figure

1112
00:36:19.877 --> 00:36:21.559
it out, is service

1113
00:36:21.579 --> 00:36:23.661
delivery is different in every state.

1114
00:36:23.681 --> 00:36:25.463
Some states have a fee for service

1115
00:36:25.483 --> 00:36:26.831
vendor system,

1116
00:36:26.851 --> 00:36:29.934
so some give grants to nonprofit

1117
00:36:29.954 --> 00:36:31.102
or profit provider

1118
00:36:31.122 --> 00:36:33.304
programs around the state.

1119
00:36:33.324 --> 00:36:36.340
Others have links to local lead agencies.

1120
00:36:36.360 --> 00:36:37.542
Find out the structure

1121
00:36:37.562 --> 00:36:39.076
and who are the key people.

1122
00:36:39.096 --> 00:36:40.044
And it looks like probably

1123
00:36:40.064 --> 00:36:42.613
many of you already know that.

1124
00:36:42.633 --> 00:36:44.882
Just see my slide here.

1125
00:36:44.902 --> 00:36:46.017
Probably you do know,

1126
00:36:46.037 --> 00:36:46.751
but I want to make sure

1127
00:36:46.771 --> 00:36:47.685
I emphasize it

1128
00:36:47.705 --> 00:36:50.354
services under Part C

1129
00:36:50.374 --> 00:36:51.989
so a child's referred,

1130
00:36:52.009 --> 00:36:53.858
and then they're made eligible

1131
00:36:53.878 --> 00:36:54.458
if they're

1132
00:36:54.478 --> 00:36:56.861
if they meet the eligibility criteria.

1133
00:36:56.881 --> 00:37:00.131
And then an IFSP or a family services plan

1134
00:37:00.151 --> 00:37:01.799
is developed by a team.

1135
00:37:01.819 --> 00:37:02.667
And uppermost

1136
00:37:02.687 --> 00:37:04.435
in the membership of that team

1137
00:37:04.455 --> 00:37:05.536
is the parent.

1138
00:37:05.556 --> 00:37:08.306
Once that plan is developed

1139
00:37:08.326 --> 00:37:10.274
and signed by the parents,

1140
00:37:10.294 --> 00:37:12.577
the state system

1141
00:37:12.597 --> 00:37:15.179
is obligated to make sure those services

1142
00:37:15.199 --> 00:37:19.650
are available.

1143
00:37:19.670 --> 00:37:20.218
I want to make

1144
00:37:20.238 --> 00:37:21.352
sure I mentioned

1145
00:37:21.372 --> 00:37:22.720
a couple of important things

1146
00:37:22.740 --> 00:37:24.522
about the eligibility.

1147
00:37:24.542 --> 00:37:26.224
There are so many things

1148
00:37:26.244 --> 00:37:27.992
that are different

1149
00:37:28.012 --> 00:37:29.727
and many of them will fit

1150
00:37:29.747 --> 00:37:31.362
well with your EHDI program,

1151
00:37:31.382 --> 00:37:32.797
but others won't.

1152
00:37:32.817 --> 00:37:34.899
So part of your collaborative work

1153
00:37:34.919 --> 00:37:36.734
is to learn about each other's program,

1154
00:37:36.754 --> 00:37:37.735
and many of you have

1155
00:37:37.755 --> 00:37:38.636
probably already

1156
00:37:38.656 --> 00:37:40.571
spent a lot of time doing that.

1157
00:37:40.591 --> 00:37:42.340
But remember a couple of things,

1158
00:37:42.360 --> 00:37:43.441
if you would.

1159
00:37:43.461 --> 00:37:46.510
One is the criteria for eligibility

1160
00:37:46.530 --> 00:37:49.547
for early intervention is set federally

1161
00:37:49.567 --> 00:37:51.115
in the regulations

1162
00:37:51.135 --> 00:37:52.883
that they the categories,

1163
00:37:52.903 --> 00:37:54.852
but the eligibility criteria

1164
00:37:54.872 --> 00:37:56.721
is set by the state.

1165
00:37:56.741 --> 00:37:59.190
So quite literally there are states

1166
00:37:59.210 --> 00:37:59.590
where

1167
00:37:59.610 --> 00:38:00.424
if a child

1168
00:38:00.444 --> 00:38:03.661
has a hearing loss in either ear,

1169
00:38:03.681 --> 00:38:05.263
conductive not conductive,

1170
00:38:05.283 --> 00:38:07.131
they are automatically eligible.

1171
00:38:07.151 --> 00:38:09.133
But that's not true in every state.

1172
00:38:09.153 --> 00:38:10.001
And there are states

1173
00:38:10.021 --> 00:38:11.035
where children have to have

1174
00:38:11.055 --> 00:38:12.703
a certain decibel level

1175
00:38:12.723 --> 00:38:14.538
where they have to have a loss in

1176
00:38:14.558 --> 00:38:15.206
both ears

1177
00:38:15.226 --> 00:38:16.807
for a certain decibel level.

1178
00:38:16.827 --> 00:38:18.776
So you need to check on the eligibility.

1179
00:38:18.796 --> 00:38:20.978
We would like to think that there's

1180
00:38:20.998 --> 00:38:23.447
automatic eligibility, but there isn't.

1181
00:38:23.467 --> 00:38:25.283
That doesn't mean you can't still do

1182
00:38:25.303 --> 00:38:26.951
wonderful collaboration,

1183
00:38:26.971 --> 00:38:28.886
but it is a point of information

1184
00:38:28.906 --> 00:38:30.154
to share.

1185
00:38:30.174 --> 00:38:30.821
The other thing

1186
00:38:30.841 --> 00:38:32.023
that's so important,

1187
00:38:32.043 --> 00:38:34.158
I think we've mentioned data sharing.

1188
00:38:34.178 --> 00:38:35.559
You got to do data sharing.

1189
00:38:35.579 --> 00:38:37.161
And many of you or many states

1190
00:38:37.181 --> 00:38:38.496
are involved in that

1191
00:38:38.516 --> 00:38:39.730
because that's how you improve

1192
00:38:39.750 --> 00:38:40.564
both programs,

1193
00:38:40.584 --> 00:38:42.366
both the Part C program

1194
00:38:42.386 --> 00:38:43.668
and the EHDI program.

1195
00:38:43.688 --> 00:38:45.369
But when you approach data sharing,

1196
00:38:45.389 --> 00:38:47.471
and I can see many folks in here

1197
00:38:47.491 --> 00:38:48.973
who I know already have,

1198
00:38:48.993 --> 00:38:50.341
one of the things you discover

1199
00:38:50.361 --> 00:38:51.409
when you ask the first

1200
00:38:51.429 --> 00:38:53.010
couple of questions is

1201
00:38:53.030 --> 00:38:54.111
your elements are different,

1202
00:38:54.131 --> 00:38:55.813
your data elements are different.

1203
00:38:55.833 --> 00:38:58.883
There are only about 4 or 5 data elements

1204
00:38:58.903 --> 00:39:02.987
required by federal regulation in Part C,

1205
00:39:03.007 --> 00:39:04.755
and from an EHDI perspective,

1206
00:39:04.775 --> 00:39:06.957
there's a lot of data that you want

1207
00:39:06.977 --> 00:39:07.758
that you're charged

1208
00:39:07.778 --> 00:39:08.592
with gathering

1209
00:39:08.612 --> 00:39:09.994
and looking at

1210
00:39:10.014 --> 00:39:11.862
for the children that you serve,

1211
00:39:11.882 --> 00:39:13.030
and there is not always

1212
00:39:13.050 --> 00:39:15.232
that match to the data being available.

1213
00:39:15.252 --> 00:39:16.834
That's really important.

1214
00:39:16.854 --> 00:39:17.702
So sometimes

1215
00:39:17.722 --> 00:39:18.703
when it appears

1216
00:39:18.723 --> 00:39:19.737
that people are not

1217
00:39:19.757 --> 00:39:21.639
wanting to collaborate,

1218
00:39:21.659 --> 00:39:23.674
it's merely a matter of the differences

1219
00:39:23.694 --> 00:39:25.076
in the two programs

1220
00:39:25.096 --> 00:39:27.044
in the particular state you're in.

1221
00:39:27.064 --> 00:39:28.245
So talk about that.

1222
00:39:28.265 --> 00:39:30.581
You may have the same data elements,

1223
00:39:30.601 --> 00:39:32.383
but they may be just

1224
00:39:32.403 --> 00:39:33.851
defined differently.

1225
00:39:33.871 --> 00:39:35.553
So what you call exit

1226
00:39:35.573 --> 00:39:36.287
might be not

1227
00:39:36.307 --> 00:39:38.322
what Part C calls exit

1228
00:39:38.342 --> 00:39:40.091
in their data system.

1229
00:39:40.111 --> 00:39:41.325
The nice thing

1230
00:39:41.345 --> 00:39:42.426
about all the collaboration

1231
00:39:42.446 --> 00:39:44.028
we do at the national level

1232
00:39:44.048 --> 00:39:46.397
is that technical assistance is available

1233
00:39:46.417 --> 00:39:47.498
to assist in that,

1234
00:39:47.518 --> 00:39:51.102
to help you work through those things.

1235
00:39:51.122 --> 00:39:52.069
I want to make sure

1236
00:39:52.089 --> 00:39:53.938
you've seen it's been out now

1237
00:39:53.958 --> 00:39:55.506
for about a year and a half.

1238
00:39:55.526 --> 00:39:58.576
This is a federal Dear Colleague letter.

1239
00:39:58.596 --> 00:40:00.511
Really helpful okay.

1240
00:40:00.531 --> 00:40:01.379
Signed jointly.

1241
00:40:01.399 --> 00:40:03.881
You can see the watermarks at the top.

1242
00:40:03.901 --> 00:40:05.249
The Department of Education

1243
00:40:05.269 --> 00:40:07.084
and Health and Human Services

1244
00:40:07.104 --> 00:40:08.052
at the federal level

1245
00:40:08.072 --> 00:40:09.754
released this document

1246
00:40:09.774 --> 00:40:11.155
a year and a half ago.

1247
00:40:11.175 --> 00:40:12.056
And it really was

1248
00:40:12.076 --> 00:40:14.024
encouraging collaboration

1249
00:40:14.044 --> 00:40:17.461
between Part C of IDEA and EHDI

1250
00:40:17.481 --> 00:40:19.630
and really offering some tips,

1251
00:40:19.650 --> 00:40:22.066
some suggestions, some resources,

1252
00:40:22.086 --> 00:40:24.101
and actually just a clear statement

1253
00:40:24.121 --> 00:40:25.836
that the federal offices

1254
00:40:25.856 --> 00:40:29.340
really want you to collaborate together.

1255
00:40:29.360 --> 00:40:30.040
And I won’t 

1256
00:40:30.060 --> 00:40:31.075
read you all of this,

1257
00:40:31.095 --> 00:40:32.510
but you'll have it for

1258
00:40:32.530 --> 00:40:33.043
yourself.

1259
00:40:33.063 --> 00:40:34.812
But in that document,

1260
00:40:34.832 --> 00:40:37.381
they refer to the kinds of things

1261
00:40:37.401 --> 00:40:39.083
that they encourage collaboration in.

1262
00:40:39.103 --> 00:40:40.618
If we had more time

1263
00:40:40.638 --> 00:40:42.186
we could have a great discussion.

1264
00:40:42.206 --> 00:40:43.421
How many of you are collaborating

1265
00:40:43.441 --> 00:40:45.322
in planning and councils?

1266
00:40:45.342 --> 00:40:46.690
Some people said on

1267
00:40:46.710 --> 00:40:48.492
early intervention councils

1268
00:40:48.512 --> 00:40:50.027
at the state level and vice versa.

1269
00:40:50.047 --> 00:40:53.063
At some Part C people sit on EHDI councils.

1270
00:40:53.083 --> 00:40:55.266
You should be collaborating for referral,

1271
00:40:55.286 --> 00:40:57.101
family support and engagement,

1272
00:40:57.121 --> 00:40:58.969
training, technical assistance

1273
00:40:58.989 --> 00:41:02.840
and of course, data sharing.

1274
00:41:02.860 --> 00:41:03.274
Quickly,

1275
00:41:03.294 --> 00:41:04.542
I want to mention what

1276
00:41:04.562 --> 00:41:05.576
we're going to introduce here

1277
00:41:05.596 --> 00:41:06.644
at the conference.

1278
00:41:06.664 --> 00:41:07.445
We have a session.

1279
00:41:07.465 --> 00:41:08.779
A concurrent session

1280
00:41:08.799 --> 00:41:10.614
tomorrow is a new document.

1281
00:41:10.634 --> 00:41:11.916
It's a tool.

1282
00:41:11.936 --> 00:41:13.584
It took a long time in development.

1283
00:41:13.604 --> 00:41:16.086
Some of you were authors of this tool.

1284
00:41:16.106 --> 00:41:18.022
It's called Supporting State EHDI

1285
00:41:18.042 --> 00:41:20.391
and EI collaboration.

1286
00:41:20.411 --> 00:41:22.226
And it's a two part document.

1287
00:41:22.246 --> 00:41:24.094
It's got a self-assessment

1288
00:41:24.114 --> 00:41:25.496
for collaboration

1289
00:41:25.516 --> 00:41:27.231
to kind of see where you are

1290
00:41:27.251 --> 00:41:29.133
as you start working together,

1291
00:41:29.153 --> 00:41:31.302
and then a set of meeting templates

1292
00:41:31.322 --> 00:41:33.070
literally to guide your work

1293
00:41:33.090 --> 00:41:34.472
depending on where you fall

1294
00:41:34.492 --> 00:41:36.173
in the self-assessment.

1295
00:41:36.193 --> 00:41:37.508
The content was developed

1296
00:41:37.528 --> 00:41:40.010
by a national workgroup or committee,

1297
00:41:40.030 --> 00:41:41.445
the National EHDI Outcomes

1298
00:41:41.465 --> 00:41:45.349
Committee, that operated until 2024,

1299
00:41:45.369 --> 00:41:48.252
but it was in in a good 20 years, 15,

1300
00:41:48.272 --> 00:41:49.286
20 years.

1301
00:41:49.306 --> 00:41:50.454
And many of you in this room

1302
00:41:50.474 --> 00:41:52.156
were parts of that committee.

1303
00:41:52.176 --> 00:41:54.859
But there's a link to the document.

1304
00:41:54.879 --> 00:41:55.459
And then

1305
00:41:55.479 --> 00:41:55.960
where you

1306
00:41:55.980 --> 00:41:59.697
also find the document is on a web page.

1307
00:41:59.717 --> 00:42:00.998
This is echoed

1308
00:42:01.018 --> 00:42:02.399
of the DaSy Center

1309
00:42:02.419 --> 00:42:04.602
NCHAM, Hands and Voices,

1310
00:42:04.622 --> 00:42:06.237
but there are other documents

1311
00:42:06.257 --> 00:42:07.471
that are there

1312
00:42:07.491 --> 00:42:09.440
to help you with your collaboration

1313
00:42:09.460 --> 00:42:11.375
between EHDI and Part C,

1314
00:42:11.395 --> 00:42:12.576
and they're listed

1315
00:42:12.596 --> 00:42:15.346
this is a screenshot of that page

1316
00:42:15.366 --> 00:42:17.081
introducing all of them.

1317
00:42:17.101 --> 00:42:18.582
And now the new one will be loaded

1318
00:42:18.602 --> 00:42:22.453
onto that page as well.

1319
00:42:22.473 --> 00:42:23.454
And finally,

1320
00:42:23.474 --> 00:42:26.824
I'll just mention 2 or 3 little tips.

1321
00:42:26.844 --> 00:42:29.994
That just in case you are already engaged

1322
00:42:30.014 --> 00:42:30.861
and the collaboration

1323
00:42:30.881 --> 00:42:31.962
really should occur

1324
00:42:31.982 --> 00:42:33.030
at the local level

1325
00:42:33.050 --> 00:42:35.266
as well as at the state level.

1326
00:42:35.286 --> 00:42:36.467
Number one, look,

1327
00:42:36.487 --> 00:42:37.668
look at how you collaborate

1328
00:42:37.688 --> 00:42:39.837
with other programs.

1329
00:42:39.857 --> 00:42:41.138
Think of the number of partnerships

1330
00:42:41.158 --> 00:42:42.673
you've been able to establish,

1331
00:42:42.693 --> 00:42:44.909
some big ones, some little ones,

1332
00:42:44.929 --> 00:42:46.877
and think about what you could do

1333
00:42:46.897 --> 00:42:48.212
to make things happen

1334
00:42:48.232 --> 00:42:49.146
in a positive way

1335
00:42:49.166 --> 00:42:51.482
between your two programs.

1336
00:42:51.502 --> 00:42:54.451
And remember, and this is sometimes hard,

1337
00:42:54.471 --> 00:42:55.452
if you're trying hard

1338
00:42:55.472 --> 00:42:56.453
to establish

1339
00:42:56.473 --> 00:42:57.354
collaboration,

1340
00:42:57.374 --> 00:42:59.290
and it doesn't feel like it's working

1341
00:42:59.310 --> 00:43:00.124
and you feel like people

1342
00:43:00.144 --> 00:43:02.192
aren't quite there with you,

1343
00:43:02.212 --> 00:43:04.461
remember that we all want the best

1344
00:43:04.481 --> 00:43:05.629
for families.

1345
00:43:05.649 --> 00:43:07.998
Sometimes people are limited

1346
00:43:08.018 --> 00:43:10.000
and you know this because you are in your

1347
00:43:10.020 --> 00:43:11.869
in your socks, in your chairs.

1348
00:43:11.889 --> 00:43:13.070
Sometimes it's limited

1349
00:43:13.090 --> 00:43:15.306
because of the resource gap

1350
00:43:15.326 --> 00:43:18.342
and funding, numbers of people available,

1351
00:43:18.362 --> 00:43:20.411
workforce, reactions,

1352
00:43:20.431 --> 00:43:22.546
regulations, crises,

1353
00:43:22.566 --> 00:43:23.781
any number of things.

1354
00:43:23.801 --> 00:43:26.383
But bottom line, we all want the best

1355
00:43:26.403 --> 00:43:27.484
and wake up every morning

1356
00:43:27.504 --> 00:43:29.787
knowing what our goal is to do the best

1357
00:43:29.807 --> 00:43:32.022
with children and families.

1358
00:43:32.042 --> 00:43:34.158
But take an active role. Don't wait.

1359
00:43:34.178 --> 00:43:35.125
So if you feel like

1360
00:43:35.145 --> 00:43:37.294
you have reached out 4 or 5 times

1361
00:43:37.314 --> 00:43:38.596
and they never answer,

1362
00:43:38.616 --> 00:43:40.130
please keep an active role.

1363
00:43:40.150 --> 00:43:42.833
Assume collaboration will develop.

1364
00:43:42.853 --> 00:43:44.335
You may have to repeat your message

1365
00:43:44.355 --> 00:43:45.102
more than once.

1366
00:43:45.122 --> 00:43:46.770
And remember, staff turns over

1367
00:43:46.790 --> 00:43:49.206
all the time.

1368
00:43:49.226 --> 00:43:49.573
The other.

1369
00:43:49.593 --> 00:43:51.342
The last thing I would just say is

1370
00:43:51.362 --> 00:43:53.344
try not to assume

1371
00:43:53.364 --> 00:43:54.812
that everybody or

1372
00:43:54.832 --> 00:43:55.279
the person

1373
00:43:55.299 --> 00:43:55.980
you're approaching

1374
00:43:56.000 --> 00:43:58.816
if it’s EI knows what you do

1375
00:43:58.836 --> 00:44:00.684
or knows the importance of what you do.

1376
00:44:00.704 --> 00:44:01.452
Just like you don't

1377
00:44:01.472 --> 00:44:03.320
necessarily know all the detail

1378
00:44:03.340 --> 00:44:04.421
about their program.

1379
00:44:04.441 --> 00:44:06.290
So just a couple of tips

1380
00:44:06.310 --> 00:44:07.458
and thank you very much.

1381
00:44:07.478 --> 00:44:09.360
This is one of my favorite conferences

1382
00:44:09.380 --> 00:44:09.760
all year,

1383
00:44:09.780 --> 00:44:11.795
and I'm really pleased to be here.

1384
00:44:11.815 --> 00:44:14.031
I'll turn it over to our next speaker.

1385
00:44:14.051 --> 00:44:20.021
Thank you.

1386
00:44:20.041 --> 00:44:34.818


1387
00:44:34.838 --> 00:44:36.620
Hello everyone.

1388
00:44:36.640 --> 00:44:38.555
My name is Christi Batamula.

1389
00:44:38.575 --> 00:44:42.393
I'm the director of the National Beacon Center,

1390
00:44:42.413 --> 00:44:43.894
which I'll be talking to you now

1391
00:44:43.914 --> 00:44:47.464
about what our purpose is.

1392
00:44:47.484 --> 00:44:48.932
We’re

1393
00:44:48.952 --> 00:44:50.267
a national network

1394
00:44:50.287 --> 00:44:53.003
of implementation and change.

1395
00:44:53.023 --> 00:44:57.941


1396
00:44:57.961 --> 00:45:01.045
So EHDI national network

1397
00:45:01.065 --> 00:45:01.478
has three

1398
00:45:01.498 --> 00:45:05.516
centers that comprises the network

1399
00:45:05.536 --> 00:45:06.216
and National Beacon

1400
00:45:06.236 --> 00:45:08.519
Center is one of those.

1401
00:45:08.539 --> 00:45:09.420
We’re an implementation 

1402
00:45:09.440 --> 00:45:13.957
and change center. The second is the FL3 center

1403
00:45:13.977 --> 00:45:14.692
You just saw

1404
00:45:14.712 --> 00:45:16.126
Lisa Kovacs talk about Hands 

1405
00:45:16.146 --> 00:45:17.761
and Voices, which comprises

1406
00:45:17.781 --> 00:45:19.196
the FL3 Center,

1407
00:45:19.216 --> 00:45:22.433
and then the Provider Education Center.

1408
00:45:22.453 --> 00:45:25.502
The American Academy of Pediatrics

1409
00:45:25.522 --> 00:45:26.637
composes that center.

1410
00:45:26.657 --> 00:45:29.106
So essentially there are three centers

1411
00:45:29.126 --> 00:45:32.309
and essentially what we are all about is

1412
00:45:32.329 --> 00:45:33.577
if you remember,

1413
00:45:33.597 --> 00:45:35.713
states receive money from HRSA,

1414
00:45:35.733 --> 00:45:37.214
so they have HRSA funding which is

1415
00:45:37.234 --> 00:45:39.516
federal funds to operate

1416
00:45:39.536 --> 00:45:40.818
EHDI programs

1417
00:45:40.838 --> 00:45:43.554
within each state and territory.

1418
00:45:43.574 --> 00:45:44.655
We as a center provide

1419
00:45:44.675 --> 00:45:47.224
technical assistance and support

1420
00:45:47.244 --> 00:45:48.225
to those programs,

1421
00:45:48.245 --> 00:45:49.426
making sure that they're effective

1422
00:45:49.446 --> 00:45:50.894
and meeting their goals.

1423
00:45:50.914 --> 00:45:51.562
And I'll touch

1424
00:45:51.582 --> 00:45:53.397
on a few of each of those centers,

1425
00:45:53.417 --> 00:45:54.331
and their work.

1426
00:45:54.351 --> 00:45:56.233
Now I am at the Beacon Center,

1427
00:45:56.253 --> 00:45:57.401
but I know a bit about what

1428
00:45:57.421 --> 00:45:58.902
my colleagues have been up to,

1429
00:45:58.922 --> 00:45:59.503
but  at the same time,

1430
00:45:59.523 --> 00:46:01.238
I can't speak in depth to their work

1431
00:46:01.258 --> 00:46:03.273
because I can't represent their centers.

1432
00:46:03.293 --> 00:46:05.075
They have representatives here,

1433
00:46:05.095 --> 00:46:06.376
so feel free to reach out to them.

1434
00:46:06.396 --> 00:46:07.778
They're present at the conference

1435
00:46:07.798 --> 00:46:13.768
for more details about their work.

1436
00:46:13.788 --> 00:46:18.055


1437
00:46:18.075 --> 00:46:22.493
So the Beacon Network,

1438
00:46:22.513 --> 00:46:22.993
along

1439
00:46:23.013 --> 00:46:26.096
with other two centers that I mentioned,

1440
00:46:26.116 --> 00:46:26.797
we provide

1441
00:46:26.817 --> 00:46:29.867
technical assistance and training,

1442
00:46:29.887 --> 00:46:33.070
policy analysis and assessment,

1443
00:46:33.090 --> 00:46:35.539
partnership development building,

1444
00:46:35.559 --> 00:46:37.908
communication and dissemination

1445
00:46:37.928 --> 00:46:39.576
as well as evaluation.

1446
00:46:39.596 --> 00:46:41.812
So all three of our centers

1447
00:46:41.832 --> 00:46:44.047
work collaboratively.

1448
00:46:44.067 --> 00:46:45.482
We work

1449
00:46:45.502 --> 00:46:47.551
individually as well as in collaboration

1450
00:46:47.571 --> 00:46:52.422
with each other.

1451
00:46:52.442 --> 00:46:55.192
First I’d like to expand on the National Beacon Center

1452
00:46:55.212 --> 00:47:01.732
and our purpose and our goals.

1453
00:47:01.752 --> 00:47:03.634
The National Beacon Center

1454
00:47:03.654 --> 00:47:05.002
again

1455
00:47:05.022 --> 00:47:07.171
is here we’re an implementation and change

1456
00:47:07.191 --> 00:47:09.206
center,

1457
00:47:09.226 --> 00:47:11.308
and we want to support EHDI programs

1458
00:47:11.328 --> 00:47:14.478
across the board with their goals.

1459
00:47:14.498 --> 00:47:15.979
And I have some more details

1460
00:47:15.999 --> 00:47:17.447
on how we do that

1461
00:47:17.467 --> 00:47:22.686
on the next slide.

1462
00:47:22.706 --> 00:47:23.320
We work

1463
00:47:23.340 --> 00:47:24.822
with EHDI programs

1464
00:47:24.842 --> 00:47:27.191
and ensuring that they achieve their one,

1465
00:47:27.211 --> 00:47:28.725
three, six milestone goals

1466
00:47:28.745 --> 00:47:31.261
and improve on their current baselines

1467
00:47:31.281 --> 00:47:31.929
accordingly

1468
00:47:31.949 --> 00:47:33.831
and what they need to make improvements.

1469
00:47:33.851 --> 00:47:37.134
We also work in partnership closely

1470
00:47:37.154 --> 00:47:38.635
with a number of other entities

1471
00:47:38.655 --> 00:47:39.403
to do that

1472
00:47:39.423 --> 00:47:39.870
in terms

1473
00:47:39.890 --> 00:47:41.405
of how to develop

1474
00:47:41.425 --> 00:47:43.540
new partnerships to strengthen

1475
00:47:43.560 --> 00:47:47.578
the current partnerships that exist.

1476
00:47:47.598 --> 00:47:48.812
We also help implement

1477
00:47:48.832 --> 00:47:50.814
best practices in terms of language

1478
00:47:50.834 --> 00:47:52.583
acquisition, assessment outcomes.

1479
00:47:52.603 --> 00:47:54.751
A number of people have mentioned that today

1480
00:47:54.771 --> 00:47:57.921
and that 1-3-6 milestone,

1481
00:47:57.941 --> 00:47:59.623
we have to collect data on language

1482
00:47:59.643 --> 00:48:01.391
acquisition and outcomes

1483
00:48:01.411 --> 00:48:02.226
given new mandates 

1484
00:48:02.246 --> 00:48:07.898
to do so.

1485
00:48:07.918 --> 00:48:09.700
So at the Beacon Center

1486
00:48:09.720 --> 00:48:11.568
we provide a variety of activities

1487
00:48:11.588 --> 00:48:13.303
and our network is quite extensive.

1488
00:48:13.323 --> 00:48:15.072
But as is mentioned on this slide,

1489
00:48:15.092 --> 00:48:16.540
we provide technical assistance

1490
00:48:16.560 --> 00:48:20.510
to groups, to individuals, really the gamut.

1491
00:48:20.530 --> 00:48:22.713
Some of those are state coordinators,

1492
00:48:22.733 --> 00:48:24.214
others are for teams,

1493
00:48:24.234 --> 00:48:26.650
others are for particular stakeholders.

1494
00:48:26.670 --> 00:48:28.685
and it really varies

1495
00:48:28.705 --> 00:48:30.587
in terms of the technical assistance that we provide.

1496
00:48:30.607 --> 00:48:33.757
We also host monthly coordinator meetings

1497
00:48:33.777 --> 00:48:35.859
and some of those quite often

1498
00:48:35.879 --> 00:48:36.860
we might

1499
00:48:36.880 --> 00:48:38.128
invite coordinators

1500
00:48:38.148 --> 00:48:40.797
and other stakeholders to attend.

1501
00:48:40.817 --> 00:48:47.037
Those are open meetings.

1502
00:48:47.057 --> 00:48:50.407
We also do a portal for EHDI coordinators

1503
00:48:50.427 --> 00:48:51.275
where they can do

1504
00:48:51.295 --> 00:48:52.242
confirmation, sharing

1505
00:48:52.262 --> 00:48:52.976
and communicate

1506
00:48:52.996 --> 00:48:55.512
with each other behind the scenes

1507
00:48:55.532 --> 00:48:56.380
like a lister.

1508
00:48:56.400 --> 00:48:59.983
We also do onboarding curriculum,

1509
00:49:00.003 --> 00:49:02.853
and I could go into extensive detail

1510
00:49:02.873 --> 00:49:07.391
on the campaigns that we have to do them.

1511
00:49:07.411 --> 00:49:07.691
We’re also

1512
00:49:07.711 --> 00:49:09.993
the first deaf lead

1513
00:49:10.013 --> 00:49:11.895
EHDI technical assistance center.

1514
00:49:11.915 --> 00:49:13.630
And I think that’s of note

1515
00:49:13.650 --> 00:49:14.431
considering

1516
00:49:14.451 --> 00:49:18.435
that we have a deaf leadership team.

1517
00:49:18.455 --> 00:49:20.470
So this is our contact information.

1518
00:49:20.490 --> 00:49:24.908
Please do reach out to us.

1519
00:49:24.928 --> 00:49:27.144
Next is the FL3 Center,

1520
00:49:27.164 --> 00:49:30.347
and an overview of their vision.

1521
00:49:30.367 --> 00:49:31.014
And as I

1522
00:49:31.034 --> 00:49:31.748
mentioned at the beginning

1523
00:49:31.768 --> 00:49:32.950
of the presentation,

1524
00:49:32.970 --> 00:49:34.918
they support states

1525
00:49:34.938 --> 00:49:38.622
and territories programs and EHDI efforts

1526
00:49:38.642 --> 00:49:39.523
to effectively

1527
00:49:39.543 --> 00:49:40.123
reach out

1528
00:49:40.143 --> 00:49:43.460
to families and support families

1529
00:49:43.480 --> 00:49:48.598
within their setting among members.

1530
00:49:48.618 --> 00:49:50.434
And as has been mentioned

1531
00:49:50.454 --> 00:49:51.134
several times,

1532
00:49:51.154 --> 00:49:52.069
they've been in existence

1533
00:49:52.089 --> 00:49:58.059
since 2017 for Hands and Voices have been  providing that role.

1534
00:49:58.079 --> 00:50:00.978


1535
00:50:00.998 --> 00:50:03.246
This list their main objectives.

1536
00:50:03.266 --> 00:50:05.115
They assist programs

1537
00:50:05.135 --> 00:50:06.917
in achieving their goals

1538
00:50:06.937 --> 00:50:10.320
around family support.

1539
00:50:10.340 --> 00:50:11.421
And increasing

1540
00:50:11.441 --> 00:50:14.491
their capacity to engage with families,

1541
00:50:14.511 --> 00:50:15.659
particularly focusing

1542
00:50:15.679 --> 00:50:18.061
on underserved families

1543
00:50:18.081 --> 00:50:19.629
and improving partnerships

1544
00:50:19.649 --> 00:50:22.332
with organizations that serve families of

1545
00:50:22.352 --> 00:50:23.233
deaf or hard of hearing

1546
00:50:23.253 --> 00:50:28.672
children and mentorship programs.

1547
00:50:28.692 --> 00:50:29.206
Here you see

1548
00:50:29.226 --> 00:50:31.341
more about their program objectives.

1549
00:50:31.361 --> 00:50:33.410
I think those are fairly self-explanatory

1550
00:50:33.430 --> 00:50:34.144
about the family

1551
00:50:34.164 --> 00:50:38.949
support they provide.

1552
00:50:38.969 --> 00:50:41.051
And then also their contact information

1553
00:50:41.071 --> 00:50:46.256
that's here on this slide.

1554
00:50:46.276 --> 00:50:47.858
And then finally, the third center,

1555
00:50:47.878 --> 00:50:51.795
certainly not least is the PEC

1556
00:50:51.815 --> 00:50:54.898
Center is the Provider

1557
00:50:54.918 --> 00:50:56.700
Education Center.

1558
00:50:56.720 --> 00:50:59.169
And that is particularly for audiologists

1559
00:50:59.189 --> 00:51:01.738
or any provider, medical provider

1560
00:51:01.758 --> 00:51:03.907
who is working with families

1561
00:51:03.927 --> 00:51:05.375
who have deaf or hard of hearing children.

1562
00:51:05.395 --> 00:51:06.109
So that could be

1563
00:51:06.129 --> 00:51:09.112
audiologists, that could be,

1564
00:51:09.132 --> 00:51:12.049
and ENTs, otolaryngologists,

1565
00:51:12.069 --> 00:51:14.084
pediatricians,

1566
00:51:14.104 --> 00:51:15.986
just a real variety of providers

1567
00:51:16.006 --> 00:51:17.988
in the medical setting, providing support

1568
00:51:18.008 --> 00:51:23.978
to those providers

1569
00:51:23.998 --> 00:51:26.129


1570
00:51:26.149 --> 00:51:26.530
in their work with families.

1571
00:51:26.550 --> 00:51:29.933
Their work focuses on screening and diagnosis.

1572
00:51:29.953 --> 00:51:31.601
And that was mentioned earlier

1573
00:51:31.621 --> 00:51:33.103
about the laws to follow up,

1574
00:51:33.123 --> 00:51:35.072
which is a big aspect,

1575
00:51:35.092 --> 00:51:37.040
what many states and territories struggle with

1576
00:51:37.060 --> 00:51:38.742
is they're responsible oftentimes

1577
00:51:38.762 --> 00:51:39.943
to provide information

1578
00:51:39.963 --> 00:51:41.244
to families as well.

1579
00:51:41.264 --> 00:51:44.448
There are large targets,

1580
00:51:44.468 --> 00:51:45.649
long term follow up

1581
00:51:45.669 --> 00:51:50.020
and ensuring a diminished lost to follow up.

1582
00:51:50.040 --> 00:51:50.654
Their objectives,

1583
00:51:50.674 --> 00:51:54.791
are improving partnerships with providers

1584
00:51:54.811 --> 00:51:58.128
and provider organizations

1585
00:51:58.148 --> 00:51:59.463
and improving

1586
00:51:59.483 --> 00:52:00.564
confidence in communication 

1587
00:52:00.584 --> 00:52:03.133
with the effectiveness of working with families

1588
00:52:03.153 --> 00:52:04.000
of deaf or hard of hearing children

1589
00:52:04.020 --> 00:52:04.601
making sure that

1590
00:52:04.621 --> 00:52:06.236
there's timely information provided,

1591
00:52:06.256 --> 00:52:07.771
follow up provided,

1592
00:52:07.791 --> 00:52:09.873
and then they actually get engaged

1593
00:52:09.893 --> 00:52:13.710
in Part C when that transition occurs.

1594
00:52:13.730 --> 00:52:15.412
They also help providers

1595
00:52:15.432 --> 00:52:17.881
to increase their capacity to serve

1596
00:52:17.901 --> 00:52:18.682
deaf or hard of hearing

1597
00:52:18.702 --> 00:52:24.254
children and their families.

1598
00:52:24.274 --> 00:52:25.355
These are some of the ways

1599
00:52:25.375 --> 00:52:26.323
in which their program

1600
00:52:26.343 --> 00:52:30.327
supports children and families.

1601
00:52:30.347 --> 00:52:32.562
It's not just limited to us listed here,

1602
00:52:32.582 --> 00:52:36.533
but these are a few of note.

1603
00:52:36.553 --> 00:52:39.102
And then you see the PEC contact information

1604
00:52:39.122 --> 00:52:43.974
listed here as well.

1605
00:52:43.994 --> 00:52:46.376
I think to sum it up, what I would say

1606
00:52:46.396 --> 00:52:48.011
is the Beacon team

1607
00:52:48.031 --> 00:52:49.613
really wants to communicate

1608
00:52:49.633 --> 00:52:51.648
that there's no wrong door

1609
00:52:51.668 --> 00:52:53.116
into the into this network.

1610
00:52:53.136 --> 00:52:54.417
If you have any questions

1611
00:52:54.437 --> 00:52:56.686
about the Beacon center does or you're uncertain

1612
00:52:56.706 --> 00:52:57.320
which center

1613
00:52:57.340 --> 00:53:00.290
to reach out to with particular question,

1614
00:53:00.310 --> 00:53:02.592
by all means reach out any one of us

1615
00:53:02.612 --> 00:53:03.927
three.

1616
00:53:03.947 --> 00:53:06.229
And we have,

1617
00:53:06.249 --> 00:53:08.532
an email address

1618
00:53:08.552 --> 00:53:10.700
that you can reach out to generically 

1619
00:53:10.720 --> 00:53:12.135
or you can reach out individually

1620
00:53:12.155 --> 00:53:13.270
to one of our centers.

1621
00:53:13.290 --> 00:53:15.105
And we do refer you to the right person

1622
00:53:15.125 --> 00:53:15.705
or center

1623
00:53:15.725 --> 00:53:18.141
the FL3, PEC or Beacon Center.

1624
00:53:18.161 --> 00:53:19.376
We work collaboratively.

1625
00:53:19.396 --> 00:53:20.911
We'll make sure that you get

1626
00:53:20.931 --> 00:53:21.778
to the right place.

1627
00:53:21.798 --> 00:53:23.013
There's no wrong question,

1628
00:53:23.033 --> 00:53:25.081
no wrong time, no wrong door.

1629
00:53:25.101 --> 00:53:27.184
By all means, reach out to any of us,

1630
00:53:27.204 --> 00:53:27.584
and we can

1631
00:53:27.604 --> 00:53:30.787
provide, and lend support and assistance.

1632
00:53:30.807 --> 00:53:31.888
As has been mentioned,

1633
00:53:31.908 --> 00:53:33.523
if you have any specific questions

1634
00:53:33.543 --> 00:53:35.325
about the other three centers

1635
00:53:35.345 --> 00:53:36.660
outside of the Beacon Center,

1636
00:53:36.680 --> 00:53:37.561
they have representatives

1637
00:53:37.581 --> 00:53:38.461
present in the conference

1638
00:53:38.481 --> 00:53:41.598
and feel free to reach out to them.

1639
00:53:41.618 --> 00:53:41.998
Thank you.

1640
00:53:42.018 --> 00:53:42.599
And I will turn it

1641
00:53:42.619 --> 00:53:48.589
over to our next speaker.

1642
00:53:48.609 --> 00:53:54.811


1643
00:53:54.831 --> 00:53:55.478
Good afternoon.

1644
00:53:55.498 --> 00:53:56.346
My name is Mandy

1645
00:53:56.366 --> 00:53:58.014
Jay, and I am a program

1646
00:53:58.034 --> 00:54:01.851
coordinator with NCHAM and have been

1647
00:54:01.871 --> 00:54:03.553
a proud attender of the conference

1648
00:54:03.573 --> 00:54:05.322
for not 25 years but

1649
00:54:05.342 --> 00:54:06.356
pretty close, I think

1650
00:54:06.376 --> 00:54:07.324
I've determined

1651
00:54:07.344 --> 00:54:10.961
it was 22, so pretty good. 

1652
00:54:10.981 --> 00:54:12.329
So I'm going to take a few minutes

1653
00:54:12.349 --> 00:54:15.532
to talk about expanding EHDI,

1654
00:54:15.552 --> 00:54:18.101
the direction of expanding the EHDI systems

1655
00:54:18.121 --> 00:54:18.835
for everyone

1656
00:54:18.855 --> 00:54:22.239
that they should be aware of.

1657
00:54:22.259 --> 00:54:24.140
So obviously, newborn hearing screening

1658
00:54:24.160 --> 00:54:25.041
as an excellent way

1659
00:54:25.061 --> 00:54:25.942
to identify

1660
00:54:25.962 --> 00:54:27.244
congenital hearing loss

1661
00:54:27.264 --> 00:54:29.045
in the general population.

1662
00:54:29.065 --> 00:54:30.313
It's estimated,

1663
00:54:30.333 --> 00:54:31.581
as others have already said,

1664
00:54:31.601 --> 00:54:33.450
that 98% of children in the U.S.

1665
00:54:33.470 --> 00:54:35.118
are now screened for hearing loss

1666
00:54:35.138 --> 00:54:37.053
during the newborn period,

1667
00:54:37.073 --> 00:54:38.955
most of them even been screened

1668
00:54:38.975 --> 00:54:41.124
before they leave the hospital.

1669
00:54:41.144 --> 00:54:42.692
This practice, in conjunction

1670
00:54:42.712 --> 00:54:44.261
with diagnosis and intervention,

1671
00:54:44.281 --> 00:54:45.328
follow up steps

1672
00:54:45.348 --> 00:54:46.463
that would have been described

1673
00:54:46.483 --> 00:54:48.164
as the 1-3-6

1674
00:54:48.184 --> 00:54:49.032
framework,

1675
00:54:49.052 --> 00:54:50.066
has helped to ensure

1676
00:54:50.086 --> 00:54:51.301
that children with permanent

1677
00:54:51.321 --> 00:54:53.203
congenital hearing loss

1678
00:54:53.223 --> 00:54:55.739
have access to language

1679
00:54:55.759 --> 00:54:56.973
with the absolute minimum

1680
00:54:56.993 --> 00:54:58.008
amount of disruption

1681
00:54:58.028 --> 00:54:59.175
or delay in their language

1682
00:54:59.195 --> 00:55:01.077
acquisition journey.

1683
00:55:01.097 --> 00:55:03.246
We have invested heavily

1684
00:55:03.266 --> 00:55:04.814
in the provision of these services

1685
00:55:04.834 --> 00:55:06.583
and have a lot to be proud of,

1686
00:55:06.603 --> 00:55:08.084
but we don't want to stop there.

1687
00:55:08.104 --> 00:55:11.621
We want to keep going.

1688
00:55:11.641 --> 00:55:13.390
Some might say as important

1689
00:55:13.410 --> 00:55:15.258
as life and life changing as newborn

1690
00:55:15.278 --> 00:55:15.592
hearing

1691
00:55:15.612 --> 00:55:19.729
screening is for so many children,

1692
00:55:19.749 --> 00:55:22.465
we don't want to stop there.

1693
00:55:22.485 --> 00:55:24.100
Because not all cases of early

1694
00:55:24.120 --> 00:55:24.801
childhood hearing

1695
00:55:24.821 --> 00:55:26.603
loss can be identified at birth

1696
00:55:26.623 --> 00:55:28.872
through the newborn screening process.

1697
00:55:28.892 --> 00:55:29.572
In reality,

1698
00:55:29.592 --> 00:55:31.174
we can't stop there

1699
00:55:31.194 --> 00:55:32.976
and expect that all young children

1700
00:55:32.996 --> 00:55:34.577
who are deaf or hard of hearing

1701
00:55:34.597 --> 00:55:38.915
will be identified in a timely fashion.

1702
00:55:38.935 --> 00:55:39.916
That's because permanent

1703
00:55:39.936 --> 00:55:40.650
hearing loss

1704
00:55:40.670 --> 00:55:43.820
can develop at any time in a child's life

1705
00:55:43.840 --> 00:55:46.289
as a result of illness,

1706
00:55:46.309 --> 00:55:49.959
physical trauma, environmental factors,

1707
00:55:49.979 --> 00:55:53.229
or genetic factors.

1708
00:55:53.249 --> 00:55:54.631
In fact, research

1709
00:55:54.651 --> 00:55:56.099
suggests that the incidence

1710
00:55:56.119 --> 00:55:57.901
of permanent hearing loss

1711
00:55:57.921 --> 00:55:58.435
and this,

1712
00:55:58.455 --> 00:55:58.802
by the way,

1713
00:55:58.822 --> 00:55:59.836
when I have this statistic,

1714
00:55:59.856 --> 00:56:02.005
the first time, it was shocking to me.

1715
00:56:02.025 --> 00:56:05.475
Doubles between birth and school age,

1716
00:56:05.495 --> 00:56:08.445
from about 3 to 1000 at birth

1717
00:56:08.465 --> 00:56:11.448
to about 6 in 1000 by the time children

1718
00:56:11.468 --> 00:56:12.716
enter school.

1719
00:56:12.736 --> 00:56:14.050
So it's a pretty big jump

1720
00:56:14.070 --> 00:56:17.220
and we don't want to let that go.

1721
00:56:17.240 --> 00:56:18.221
This increase

1722
00:56:18.241 --> 00:56:19.789
in potentially identifiable

1723
00:56:19.809 --> 00:56:21.424
hearing loss is occurring

1724
00:56:21.444 --> 00:56:22.559
during critical

1725
00:56:22.579 --> 00:56:23.660
early years, during

1726
00:56:23.680 --> 00:56:25.061
which children are actively

1727
00:56:25.081 --> 00:56:27.230
acquiring language for the first time.

1728
00:56:27.250 --> 00:56:28.164
And even though there's

1729
00:56:28.184 --> 00:56:28.932
a tendency

1730
00:56:28.952 --> 00:56:30.934
to pay attention to expressive language

1731
00:56:30.954 --> 00:56:32.569
as children grow,

1732
00:56:32.589 --> 00:56:33.970
the development of expressive

1733
00:56:33.990 --> 00:56:35.405
language is highly dependent

1734
00:56:35.425 --> 00:56:39.876
on receptive language abilities as well.

1735
00:56:39.896 --> 00:56:41.411
This

1736
00:56:41.431 --> 00:56:42.746
from many children

1737
00:56:42.766 --> 00:56:43.847
as a function of hearing,

1738
00:56:43.867 --> 00:56:44.848
and all too often

1739
00:56:44.868 --> 00:56:46.483
it is assumed that children

1740
00:56:46.503 --> 00:56:47.617
are hearing at the levels

1741
00:56:47.637 --> 00:56:49.452
we would typically expect,

1742
00:56:49.472 --> 00:56:50.453
and that if they are not,

1743
00:56:50.473 --> 00:56:51.454
this would be picked up

1744
00:56:51.474 --> 00:56:53.490
as part of a well-child visit

1745
00:56:53.510 --> 00:56:57.827
with your pediatrician.

1746
00:56:57.847 --> 00:57:00.497
Currently, there is no uniform system

1747
00:57:00.517 --> 00:57:02.165
whereby children continue

1748
00:57:02.185 --> 00:57:03.700
to receive hearing screenings

1749
00:57:03.720 --> 00:57:05.301
during this first two three period

1750
00:57:05.321 --> 00:57:07.771
as a matter of standard practice.

1751
00:57:07.791 --> 00:57:09.038
Despite the tremendous

1752
00:57:09.058 --> 00:57:10.607
emphasis placed on placed

1753
00:57:10.627 --> 00:57:12.475
on the importance of early language

1754
00:57:12.495 --> 00:57:13.777
and so many early care

1755
00:57:13.797 --> 00:57:15.812
in educational settings,

1756
00:57:15.832 --> 00:57:17.981
it comes as a surprise to many parents

1757
00:57:18.001 --> 00:57:19.482
and even professionals

1758
00:57:19.502 --> 00:57:22.352
that even though a child may be seen

1759
00:57:22.372 --> 00:57:23.586
during a regular child,

1760
00:57:23.606 --> 00:57:24.554
well child visit

1761
00:57:24.574 --> 00:57:26.823
with the health care provider,

1762
00:57:26.843 --> 00:57:28.091
evidence based hearing

1763
00:57:28.111 --> 00:57:30.627
screening is not typically occurring

1764
00:57:30.647 --> 00:57:33.563
during these visits during this period.

1765
00:57:33.583 --> 00:57:34.130
In fact,

1766
00:57:34.150 --> 00:57:35.498
according to the Bright Futures

1767
00:57:35.518 --> 00:57:37.500
guidelines from the American Academy

1768
00:57:37.520 --> 00:57:38.802
of Pediatrics,

1769
00:57:38.822 --> 00:57:40.203
after the newborn period

1770
00:57:40.223 --> 00:57:41.337
and objective hearing

1771
00:57:41.357 --> 00:57:42.806
screening as part of the well child

1772
00:57:42.826 --> 00:57:45.442
protocol is not recommended again

1773
00:57:45.462 --> 00:57:47.277
until age four

1774
00:57:47.297 --> 00:57:49.212
as a matter of standard practice.

1775
00:57:49.232 --> 00:57:50.680
So that's a big gap

1776
00:57:50.700 --> 00:57:51.214
during this

1777
00:57:51.234 --> 00:57:51.948
critical period

1778
00:57:51.968 --> 00:57:53.082
where language

1779
00:57:53.102 --> 00:57:55.185
acquisition is so essential.

1780
00:57:55.205 --> 00:57:56.653
And this means that monitoring

1781
00:57:56.673 --> 00:57:57.287
hearing during

1782
00:57:57.307 --> 00:57:59.255
this period is dependent on others

1783
00:57:59.275 --> 00:58:03.593
who are involved in the child's life.

1784
00:58:03.613 --> 00:58:04.694
The incidence of

1785
00:58:04.714 --> 00:58:05.829
3 in 1000

1786
00:58:05.849 --> 00:58:07.130
children having permanent

1787
00:58:07.150 --> 00:58:08.565
hearing loss at birth,

1788
00:58:08.585 --> 00:58:10.033
and its potential impact

1789
00:58:10.053 --> 00:58:11.167
on language acquisition

1790
00:58:11.187 --> 00:58:13.336
and overall development, serves

1791
00:58:13.356 --> 00:58:14.504
as the rationale

1792
00:58:14.524 --> 00:58:15.972
for a national commitment

1793
00:58:15.992 --> 00:58:17.841
to newborn hearing screening.

1794
00:58:17.861 --> 00:58:19.409
So if that's the case,

1795
00:58:19.429 --> 00:58:20.643
then having that same number

1796
00:58:20.663 --> 00:58:21.678
of potentially

1797
00:58:21.698 --> 00:58:23.680
identifiable children again

1798
00:58:23.700 --> 00:58:26.249
during the years approaching school age

1799
00:58:26.269 --> 00:58:28.551
serves as an equally compelling rationale

1800
00:58:28.571 --> 00:58:29.819
for continuing to screen

1801
00:58:29.839 --> 00:58:33.356
throughout early childhood.

1802
00:58:33.376 --> 00:58:38.828
And I.

1803
00:58:38.848 --> 00:58:41.698
During the reauthorization

1804
00:58:41.718 --> 00:58:44.767
Act of 2017, for the first time,

1805
00:58:44.787 --> 00:58:46.369
there was an expansion in the scope,

1806
00:58:46.389 --> 00:58:48.037
that EHDI be on the newborn period

1807
00:58:48.057 --> 00:58:49.572
to include identification

1808
00:58:49.592 --> 00:58:50.440
of children who were deaf

1809
00:58:50.460 --> 00:58:52.709
or hard of hearing up to three years.

1810
00:58:52.729 --> 00:58:55.945
This means that EHDI systems were tasked

1811
00:58:55.965 --> 00:58:56.479
to start

1812
00:58:56.499 --> 00:58:58.314
planning on how to expand state

1813
00:58:58.334 --> 00:58:59.382
EHDI infrastructure,

1814
00:58:59.402 --> 00:59:00.750
including data collection

1815
00:59:00.770 --> 00:59:01.551
and reporting

1816
00:59:01.571 --> 00:59:02.619
for hearing screening

1817
00:59:02.639 --> 00:59:05.421
for children up to age three, and Sharon and

1818
00:59:05.441 --> 00:59:06.055
Stephanie,

1819
00:59:06.075 --> 00:59:06.589
I mean, almost

1820
00:59:06.609 --> 00:59:07.891
everybody has talked about

1821
00:59:07.911 --> 00:59:09.792
how we're already doing,

1822
00:59:09.812 --> 00:59:11.561
We have been doing that.

1823
00:59:11.581 --> 00:59:15.565
We just need to continue to expand.

1824
00:59:15.585 --> 00:59:17.133
During the 20 to 24 EHDI

1825
00:59:17.153 --> 00:59:17.901
grant cycle,

1826
00:59:17.921 --> 00:59:20.937
HRSA required states to develop a plan

1827
00:59:20.957 --> 00:59:22.372
to expand infrastructure,

1828
00:59:22.392 --> 00:59:23.673
including data collection

1829
00:59:23.693 --> 00:59:25.041
reporting for hearing screen

1830
00:59:25.061 --> 00:59:27.577
for children up to three years of age.

1831
00:59:27.597 --> 00:59:28.778
This suggested

1832
00:59:28.798 --> 00:59:31.047
there will be a period of expansion,

1833
00:59:31.067 --> 00:59:32.248
but there was no clear

1834
00:59:32.268 --> 00:59:34.317
definition of a funding mechanism

1835
00:59:34.337 --> 00:59:36.653
to achieve this expansion.

1836
00:59:36.673 --> 00:59:37.587
There are many questions

1837
00:59:37.607 --> 00:59:38.621
remaining about how

1838
00:59:38.641 --> 00:59:41.691
this will continue to unfold.

1839
00:59:41.711 --> 00:59:43.793
So what HRSA did was clarify

1840
00:59:43.813 --> 00:59:44.861
that state EHDI programs

1841
00:59:44.881 --> 00:59:46.195
were not going to be expected

1842
00:59:46.215 --> 00:59:47.196
on their own

1843
00:59:47.216 --> 00:59:48.097
to implement

1844
00:59:48.117 --> 00:59:49.432
a universal screening program

1845
00:59:49.452 --> 00:59:50.900
for all children.

1846
00:59:50.920 --> 00:59:52.602
Instead, states were being guided

1847
00:59:52.622 --> 00:59:54.437
to develop collaborations.

1848
00:59:54.457 --> 00:59:55.038
I think we’ve heard

1849
00:59:55.058 --> 00:59:57.073
that word a time or two

1850
00:59:57.093 --> 00:59:59.709
with various early childhood stakeholders

1851
00:59:59.729 --> 01:00:01.010
and their respective states

1852
01:00:01.030 --> 01:00:02.679
to improve identification

1853
01:00:02.699 --> 01:00:04.180
in a timely way.

1854
01:00:04.200 --> 01:00:09.552
Something similar to the 1-3-6.

1855
01:00:09.572 --> 01:00:10.653
Building a system for

1856
01:00:10.673 --> 01:00:12.221
ongoing identification of children

1857
01:00:12.241 --> 01:00:14.057
who are deaf or hard of hearing

1858
01:00:14.077 --> 01:00:17.427
would reasonably begin

1859
01:00:17.447 --> 01:00:18.394
by collaborating

1860
01:00:18.414 --> 01:00:20.029
with those already providing

1861
01:00:20.049 --> 01:00:20.730
various health

1862
01:00:20.750 --> 01:00:25.435
or educational services to young children.

1863
01:00:25.455 --> 01:00:28.204
At the time and the 2017 reauthorization,

1864
01:00:28.224 --> 01:00:30.173
some EHDI programs were already working

1865
01:00:30.193 --> 01:00:31.441
with some of these providers

1866
01:00:31.461 --> 01:00:32.675
and as

1867
01:00:32.695 --> 01:00:36.112
as others have already talked about,

1868
01:00:36.132 --> 01:00:38.348
this is an important

1869
01:00:38.368 --> 01:00:40.817
collaboration to continue to build on.

1870
01:00:40.837 --> 01:00:42.652
Some of these included Early Head

1871
01:00:42.672 --> 01:00:44.787
Start and Head Start programs,

1872
01:00:44.807 --> 01:00:45.588
Part C

1873
01:00:45.608 --> 01:00:47.256
and Early intervention programs,

1874
01:00:47.276 --> 01:00:48.658
home visiting programs

1875
01:00:48.678 --> 01:00:50.293
and health care providers,

1876
01:00:50.313 --> 01:00:52.428
and community health centers.

1877
01:00:52.448 --> 01:00:53.396
While meaningful

1878
01:00:53.416 --> 01:00:55.031
collaboration can be developed in

1879
01:00:55.051 --> 01:00:57.700
any of these, where there was an interest

1880
01:00:57.720 --> 01:01:00.003
from our 20 plus years of experience

1881
01:01:00.023 --> 01:01:02.205
at NCHAM focused on birth to three hearing

1882
01:01:02.225 --> 01:01:03.373
screening primarily

1883
01:01:03.393 --> 01:01:05.375
in early Head Start settings

1884
01:01:05.395 --> 01:01:07.176
and the findings of our environmental scan,

1885
01:01:07.196 --> 01:01:10.079
that we did several years ago,

1886
01:01:10.099 --> 01:01:12.181
and we're asked by HRSA to conduct,

1887
01:01:12.201 --> 01:01:12.615
we think

1888
01:01:12.635 --> 01:01:13.850
the most obvious places

1889
01:01:13.870 --> 01:01:15.818
to focus on EHDI expansion

1890
01:01:15.838 --> 01:01:16.986
are when those already

1891
01:01:17.006 --> 01:01:18.121
have a commitment

1892
01:01:18.141 --> 01:01:20.890
to providing care and screening services.

1893
01:01:20.910 --> 01:01:23.359
And we think of these as the low

1894
01:01:23.379 --> 01:01:24.727
hanging fruit.

1895
01:01:24.747 --> 01:01:27.563
So again at the early Head Start and Head Start

1896
01:01:27.583 --> 01:01:28.631
programs, the Part C,

1897
01:01:28.651 --> 01:01:30.767
the early intervention programs,

1898
01:01:30.787 --> 01:01:32.135
and we definitely want to build

1899
01:01:32.155 --> 01:01:33.703
with our collaboration

1900
01:01:33.723 --> 01:01:36.572
with them to work on this expansion

1901
01:01:36.592 --> 01:01:39.709
of screening.

1902
01:01:39.729 --> 01:01:41.177
In case you aren’t familiar,

1903
01:01:41.197 --> 01:01:42.545
I want to give a quick overview

1904
01:01:42.565 --> 01:01:44.347
of each of these programs.

1905
01:01:44.367 --> 01:01:45.314
The Head Start program

1906
01:01:45.334 --> 01:01:47.417
is a federally funded and administered

1907
01:01:47.437 --> 01:01:49.385
program found in every state to promote

1908
01:01:49.405 --> 01:01:51.054
school readiness for children

1909
01:01:51.074 --> 01:01:53.222
in low income families.

1910
01:01:53.242 --> 01:01:57.393
They offer educational, nutritional,

1911
01:01:57.413 --> 01:02:00.129
health, social, and other services

1912
01:02:00.149 --> 01:02:04.500
to these families.

1913
01:02:04.520 --> 01:02:05.368
All community

1914
01:02:05.388 --> 01:02:07.070
based Head Start programs are required

1915
01:02:07.090 --> 01:02:08.538
to provide annual evidence

1916
01:02:08.558 --> 01:02:10.173
based hearing screenings to children,

1917
01:02:10.193 --> 01:02:11.174
starting with the first

1918
01:02:11.194 --> 01:02:14.410
45 days of enrollment.  For more than 20

1919
01:02:14.430 --> 01:02:14.811
years,

1920
01:02:14.831 --> 01:02:16.446
NCHAM has had

1921
01:02:16.466 --> 01:02:18.581
a concentrated effort to assist programs

1922
01:02:18.601 --> 01:02:20.049
in developing, implementing,

1923
01:02:20.069 --> 01:02:21.484
and maintaining evidence

1924
01:02:21.504 --> 01:02:23.219
based caring screen practices

1925
01:02:23.239 --> 01:02:24.987
in Head Start settings,

1926
01:02:25.007 --> 01:02:26.723
and that has led to the identification

1927
01:02:26.743 --> 01:02:28.591
of many hundreds of children

1928
01:02:28.611 --> 01:02:30.026
with permanent hearing loss

1929
01:02:30.046 --> 01:02:31.527
that might not have been captured

1930
01:02:31.547 --> 01:02:33.663
somewhere else.

1931
01:02:33.683 --> 01:02:34.630
Like many programs,

1932
01:02:34.650 --> 01:02:35.898
Head Start experiences,

1933
01:02:35.918 --> 01:02:39.435
a lot of staff turnover and other changes

1934
01:02:39.455 --> 01:02:41.537
in program staff.

1935
01:02:41.557 --> 01:02:43.039
Which means the need for training

1936
01:02:43.059 --> 01:02:43.606
and technical

1937
01:02:43.626 --> 01:02:45.508
assistance is an ongoing challenge

1938
01:02:45.528 --> 01:02:47.510
and one that state EHDI programs

1939
01:02:47.530 --> 01:02:49.512
have a critical potential role

1940
01:02:49.532 --> 01:02:50.179
in supporting,

1941
01:02:50.199 --> 01:02:51.180
along with ensuring

1942
01:02:51.200 --> 01:02:52.982
the identified children are connected

1943
01:02:53.002 --> 01:02:57.520
with the services that they need.

1944
01:02:57.540 --> 01:02:57.920
The other

1945
01:02:57.940 --> 01:02:58.721
program found in

1946
01:02:58.741 --> 01:02:59.388
every state

1947
01:02:59.408 --> 01:03:01.190
that has an existing

1948
01:03:01.210 --> 01:03:01.724
commitment

1949
01:03:01.744 --> 01:03:04.093
to early identification of hearing loss

1950
01:03:04.113 --> 01:03:06.929
is the federally funded

1951
01:03:06.949 --> 01:03:07.864
intervention program

1952
01:03:07.884 --> 01:03:08.965
for infants and toddlers

1953
01:03:08.985 --> 01:03:09.932
with disabilities

1954
01:03:09.952 --> 01:03:14.570
known as Part C of the IDEA.

1955
01:03:14.590 --> 01:03:16.372
This program entitles

1956
01:03:16.392 --> 01:03:17.540
eligible children birth

1957
01:03:17.560 --> 01:03:19.275
to three years of age and their families

1958
01:03:19.295 --> 01:03:20.643
to a range of services

1959
01:03:20.663 --> 01:03:26.633
to promote early development.

1960
01:03:26.653 --> 01:03:28.718


1961
01:03:28.738 --> 01:03:30.086
In addition to serving children

1962
01:03:30.106 --> 01:03:30.987
with disabilities

1963
01:03:31.007 --> 01:03:32.555
identified through other avenues

1964
01:03:32.575 --> 01:03:33.256
such as the Newborn

1965
01:03:33.276 --> 01:03:34.824
Hearing Screening Program,

1966
01:03:34.844 --> 01:03:36.325
Part C programs are required

1967
01:03:36.345 --> 01:03:37.827
to actively engage in

1968
01:03:37.847 --> 01:03:38.795
identifying children

1969
01:03:38.815 --> 01:03:42.131
with developmental delays or disabilities.

1970
01:03:42.151 --> 01:03:44.534
When a parent or early care or education

1971
01:03:44.554 --> 01:03:45.668
provider has concerns

1972
01:03:45.688 --> 01:03:46.769
about child development,

1973
01:03:46.789 --> 01:03:47.870
the child may be referred

1974
01:03:47.890 --> 01:03:51.607
to Part C programs.

1975
01:03:51.627 --> 01:03:51.874
These

1976
01:03:51.894 --> 01:03:52.942
referrals

1977
01:03:52.962 --> 01:03:55.545
are made to the mandated Child Find

1978
01:03:55.565 --> 01:03:56.712
component of Part C.

1979
01:03:56.732 --> 01:03:58.748
Where the child receives

1980
01:03:58.768 --> 01:04:00.750
a multidisciplinary evaluation

1981
01:04:00.770 --> 01:04:03.853
focusing on the five developmental delays

1982
01:04:03.873 --> 01:04:05.521
cognitive development,

1983
01:04:05.541 --> 01:04:06.622
physical development

1984
01:04:06.642 --> 01:04:09.192
including vision and hearing,

1985
01:04:09.212 --> 01:04:11.394
communication development,

1986
01:04:11.414 --> 01:04:14.197
social emotional development,

1987
01:04:14.217 --> 01:04:19.202
and adaptive development.

1988
01:04:19.222 --> 01:04:20.503
That evaluation is

1989
01:04:20.523 --> 01:04:22.338
then used to determine if the child meets

1990
01:04:22.358 --> 01:04:23.539
the state's definition

1991
01:04:23.559 --> 01:04:25.107
of having a developmental delay

1992
01:04:25.127 --> 01:04:26.209
or disability,

1993
01:04:26.229 --> 01:04:27.043
and to determine

1994
01:04:27.063 --> 01:04:28.211
if the child is eligible

1995
01:04:28.231 --> 01:04:30.179
for early intervention services.

1996
01:04:30.199 --> 01:04:31.581
And Sharon has already covered that.

1997
01:04:31.601 --> 01:04:33.449
If you know one Part C program, you know

1998
01:04:33.469 --> 01:04:34.650
one Part C program.

1999
01:04:34.670 --> 01:04:39.689
So that is going to vary state by state.

2000
01:04:39.709 --> 01:04:42.625
So as we look at the continued expansion

2001
01:04:42.645 --> 01:04:42.992
in this,

2002
01:04:43.012 --> 01:04:43.693
these efforts,

2003
01:04:43.713 --> 01:04:44.660
we want to consider

2004
01:04:44.680 --> 01:04:45.394
the low hanging

2005
01:04:45.414 --> 01:04:48.564
fruit is just a starting place.

2006
01:04:48.584 --> 01:04:50.933
We have got lots of resources on this

2007
01:04:50.953 --> 01:04:53.502
to learn more about it. Please,

2008
01:04:53.522 --> 01:04:55.471
check out, infanthearing.org

2009
01:04:55.491 --> 01:04:57.607
the resources are there,

2010
01:04:57.627 --> 01:04:59.475
and Karl's going to talk about resources

2011
01:04:59.495 --> 01:05:00.509
here in just a minute.

2012
01:05:00.529 --> 01:05:02.745
We do have the core of EHDI

2013
01:05:02.765 --> 01:05:05.281
tutorials

2014
01:05:05.301 --> 01:05:06.482
where you will find the

2015
01:05:06.502 --> 01:05:07.683
tutorial dedicated

2016
01:05:07.703 --> 01:05:09.385
specifically to this topic.

2017
01:05:09.405 --> 01:05:10.253
And you can

2018
01:05:10.273 --> 01:05:11.320
the QR code will take

2019
01:05:11.340 --> 01:05:14.790
you straight to that.

2020
01:05:14.810 --> 01:05:16.425
We a variety of resources in

2021
01:05:16.445 --> 01:05:16.993
kidshearing.org

2022
01:05:17.013 --> 01:05:20.830
including training for screening,

2023
01:05:20.850 --> 01:05:24.000
that is really fantastic and practical

2024
01:05:24.020 --> 01:05:26.569
knowledge for people

2025
01:05:26.589 --> 01:05:27.036
who are getting

2026
01:05:27.056 --> 01:05:31.040
screening for these children.

2027
01:05:31.060 --> 01:05:32.742
And there's more about that at the

2028
01:05:32.762 --> 01:05:34.243
learntoscreen.org

2029
01:05:34.263 --> 01:05:37.980
for OAEs and Pure Tone Screening,

2030
01:05:38.000 --> 01:05:41.984
training is available there.

2031
01:05:42.004 --> 01:05:47.974
And I think that that leads to Karl.

2032
01:05:47.994 --> 01:05:54.563


2033
01:05:54.583 --> 01:05:55.498
We're so grateful

2034
01:05:55.518 --> 01:05:56.232
that you all thought

2035
01:05:56.252 --> 01:05:57.199
it would be worth your while

2036
01:05:57.219 --> 01:05:58.768
to come and spend a few minutes with us

2037
01:05:58.788 --> 01:06:00.202
this afternoon.

2038
01:06:00.222 --> 01:06:03.272
I am a statistics professor by training.

2039
01:06:03.292 --> 01:06:04.874
And, one of the things

2040
01:06:04.894 --> 01:06:06.309
my students often said to me

2041
01:06:06.329 --> 01:06:07.043
when I was teaching

2042
01:06:07.063 --> 01:06:08.744
statistics on a regular basis

2043
01:06:08.764 --> 01:06:10.913
is they said,

2044
01:06:10.933 --> 01:06:12.615
your class is like trying to eat

2045
01:06:12.635 --> 01:06:14.083
a basketball,

2046
01:06:14.103 --> 01:06:15.685
it’s getting the first bite,

2047
01:06:15.705 --> 01:06:17.486
that is so difficult.

2048
01:06:17.506 --> 01:06:20.923
So we've tried to give you a first bite,

2049
01:06:20.943 --> 01:06:21.891
but we know that there's

2050
01:06:21.911 --> 01:06:23.859
a lot of other information

2051
01:06:23.879 --> 01:06:27.229
that you will acquire from being here

2052
01:06:27.249 --> 01:06:28.597
at the conference.

2053
01:06:28.617 --> 01:06:30.066
In your chair

2054
01:06:30.086 --> 01:06:30.700
when you came

2055
01:06:30.720 --> 01:06:31.968
in was a one page,

2056
01:06:31.988 --> 01:06:32.702
double sided

2057
01:06:32.722 --> 01:06:36.806
handout of Quick Start Guide for EHDI,

2058
01:06:36.826 --> 01:06:39.308
and it lists a variety of programs

2059
01:06:39.328 --> 01:06:42.912
that are available on our website.

2060
01:06:42.932 --> 01:06:44.947
We don't expect you to digest all of that

2061
01:06:44.967 --> 01:06:47.216
during the next two and a half days.

2062
01:06:47.236 --> 01:06:48.851
But hopefully it'll give you a resource

2063
01:06:48.871 --> 01:06:50.186
that you can go back to

2064
01:06:50.206 --> 01:06:52.955
and get some information.

2065
01:06:52.975 --> 01:06:53.189
I think

2066
01:06:53.209 --> 01:06:54.824
one of the most important things

2067
01:06:54.844 --> 01:06:57.093
for you will be this conference,

2068
01:06:57.113 --> 01:06:59.395
and we encourage you to step outside

2069
01:06:59.415 --> 01:07:00.162
your comfort zone

2070
01:07:00.182 --> 01:07:01.330
a little bit

2071
01:07:01.350 --> 01:07:02.298
go meet some people

2072
01:07:02.318 --> 01:07:03.766
that you didn't know before,

2073
01:07:03.786 --> 01:07:05.334
go to a booth

2074
01:07:05.354 --> 01:07:06.769
in the exhibit hall that you thought

2075
01:07:06.789 --> 01:07:09.171
you have no interest in,

2076
01:07:09.191 --> 01:07:10.306
several people mentioned

2077
01:07:10.326 --> 01:07:11.140
at the beginning

2078
01:07:11.160 --> 01:07:13.275
that EHDI is like a big family.

2079
01:07:13.295 --> 01:07:14.877
And, it is

2080
01:07:14.897 --> 01:07:17.313
and we welcome you to that family

2081
01:07:17.333 --> 01:07:18.147
but we encourage you

2082
01:07:18.167 --> 01:07:19.815
to get to know your siblings

2083
01:07:19.835 --> 01:07:21.884
and find out what's happening

2084
01:07:21.904 --> 01:07:24.520
in EHDI programs.

2085
01:07:24.540 --> 01:07:27.023
in addition to that, on the website,

2086
01:07:27.043 --> 01:07:30.359
we have what’s called and the NCHAM E-book

2087
01:07:30.379 --> 01:07:32.795
that about 25 chapters

2088
01:07:32.815 --> 01:07:33.329
have been written

2089
01:07:33.349 --> 01:07:35.931
by experts in the field that was designed

2090
01:07:35.951 --> 01:07:37.333
specifically for people

2091
01:07:37.353 --> 01:07:38.634
who are new to EHDI 

2092
01:07:38.654 --> 01:07:39.702
programs

2093
01:07:39.722 --> 01:07:42.371
written at just an introductory level,

2094
01:07:42.391 --> 01:07:43.706
so that might be a resource

2095
01:07:43.726 --> 01:07:46.342
you want to check out.

2096
01:07:46.362 --> 01:07:48.144
One of the resources that we’ve maintained

2097
01:07:48.164 --> 01:07:48.444
now

2098
01:07:48.464 --> 01:07:49.445
for a number of years

2099
01:07:49.465 --> 01:07:52.715
is the Eddie Pals program.

2100
01:07:52.735 --> 01:07:54.050
So it's the pediatric

2101
01:07:54.070 --> 01:07:56.352
audiology links to services.

2102
01:07:56.372 --> 01:07:58.087
It's a completely free resource

2103
01:07:58.107 --> 01:07:59.755
that if you're looking for

2104
01:07:59.775 --> 01:08:01.290
someone that has pediatric

2105
01:08:01.310 --> 01:08:02.358
audiology experience,

2106
01:08:02.378 --> 01:08:05.161
you can go to that site and it tells you

2107
01:08:05.181 --> 01:08:06.162
how many places

2108
01:08:06.182 --> 01:08:08.831
there are in your immediate area

2109
01:08:08.851 --> 01:08:10.466
or within a 50 mile radius,

2110
01:08:10.486 --> 01:08:12.735
or whatever number you put in.

2111
01:08:12.755 --> 01:08:14.236
This has been a great resource

2112
01:08:14.256 --> 01:08:16.205
for helping parents find

2113
01:08:16.225 --> 01:08:18.641
pediatric audiology.

2114
01:08:18.661 --> 01:08:19.775
Mandy referred

2115
01:08:19.795 --> 01:08:20.876
to some of the

2116
01:08:20.896 --> 01:08:21.544
newborn hearing

2117
01:08:21.564 --> 01:08:23.112
screening training curriculum

2118
01:08:23.132 --> 01:08:25.848
we have.

2119
01:08:25.868 --> 01:08:27.450
The first one

2120
01:08:27.470 --> 01:08:28.484
there is for screening

2121
01:08:28.504 --> 01:08:30.286
babies in hospitals.

2122
01:08:30.306 --> 01:08:31.821
The second one that Mandy referred to

2123
01:08:31.841 --> 01:08:32.888
is for screening

2124
01:08:32.908 --> 01:08:34.457
school-age children.

2125
01:08:34.477 --> 01:08:36.492
We also publish a journal

2126
01:08:36.512 --> 01:08:37.693
that is what's called

2127
01:08:37.713 --> 01:08:38.994
an open source journal.

2128
01:08:39.014 --> 01:08:41.230
So it's available at no cost.

2129
01:08:41.250 --> 01:08:43.766
You can download it from our website

2130
01:08:43.786 --> 01:08:46.102
it's published two times

2131
01:08:46.122 --> 01:08:47.269
each year, has

2132
01:08:47.289 --> 01:08:48.771
7 to 10 articles,

2133
01:08:48.791 --> 01:08:51.373
each time on a variety of topics.

2134
01:08:51.393 --> 01:08:53.976
So there's a lot of information out there

2135
01:08:53.996 --> 01:08:56.278
that you can continue to access.

2136
01:08:56.298 --> 01:08:59.348
We didn't expect this one

2137
01:08:59.368 --> 01:09:00.583
90 minute session

2138
01:09:00.603 --> 01:09:01.450
to give you everything

2139
01:09:01.470 --> 01:09:02.885
you needed to know.

2140
01:09:02.905 --> 01:09:04.653
But, hopefully it provided a foundation

2141
01:09:04.673 --> 01:09:06.489
that you can build on

2142
01:09:06.509 --> 01:09:10.226
and gather additional information.

2143
01:09:10.246 --> 01:09:11.961
The most important thing

2144
01:09:11.981 --> 01:09:13.162
to think about is

2145
01:09:13.182 --> 01:09:16.298
everyone here is doing it together.

2146
01:09:16.318 --> 01:09:18.434
And, and EHDI been as successful

2147
01:09:18.454 --> 01:09:19.902
as it has

2148
01:09:19.922 --> 01:09:22.304
because the people

2149
01:09:22.324 --> 01:09:23.005
who are part of

2150
01:09:23.025 --> 01:09:24.373
EHDI have worked together

2151
01:09:24.393 --> 01:09:25.307
and have

2152
01:09:25.327 --> 01:09:26.809
come to understand

2153
01:09:26.829 --> 01:09:28.811
and trust each other in variety of ways,

2154
01:09:28.831 --> 01:09:31.380
and we welcome you to that community.

2155
01:09:31.400 --> 01:09:34.583
So the funnest part of this conference,

2156
01:09:34.603 --> 01:09:37.453
although we hope it will all be somewhat fun,

2157
01:09:37.473 --> 01:09:38.687
but is the reception

2158
01:09:38.707 --> 01:09:40.789
that will take place following this.

2159
01:09:40.809 --> 01:09:41.557
And then this year,

2160
01:09:41.577 --> 01:09:43.025
because it's the 25th

2161
01:09:43.045 --> 01:09:45.961
anniversary of EHDI conferences,

2162
01:09:45.981 --> 01:09:49.431
Stephanie has organized a dance,

2163
01:09:49.451 --> 01:09:52.902
that promises to be exciting, educational

2164
01:09:52.922 --> 01:09:56.038
and fun. So,

2165
01:09:56.058 --> 01:09:58.307
we do have a time for a few questions,

2166
01:09:58.327 --> 01:09:59.441
if you're interested,

2167
01:09:59.461 --> 01:10:02.378
but we want to be sure I finish by 6 o’clock. so that you can

2168
01:10:02.398 --> 01:10:03.979
go to the reception,

2169
01:10:03.999 --> 01:10:07.416
which is next door in the exhibit hall,

2170
01:10:07.436 --> 01:10:11.320
and then the dance starts at 7:30 I think.

2171
01:10:11.340 --> 01:10:13.522
So, if there are questions,

2172
01:10:13.542 --> 01:10:14.623
I'll try to moderate

2173
01:10:14.643 --> 01:10:17.893
and direct you to the person that you’d like to ask.

2174
01:10:17.913 --> 01:10:19.728
But you don't have to have a question,

2175
01:10:19.748 --> 01:10:25.000
but you do need to be near a mike.

2176
01:10:25.020 --> 01:10:30.239
Do you have mike right there to take?

2177
01:10:30.259 --> 01:10:31.707


2178
01:10:31.727 --> 01:10:37.697
So back in the corner.

2179
01:10:37.717 --> 01:10:41.350


2180
01:10:41.370 --> 01:10:42.985
My name is

2181
01:10:43.005 --> 01:10:44.353
Nikki and hearing

2182
01:10:44.373 --> 01:10:45.688
loss is a little different

2183
01:10:45.708 --> 01:10:48.390
from my family I am a parent.

2184
01:10:48.410 --> 01:10:49.758
My son was diagnosed

2185
01:10:49.778 --> 01:10:51.594
with two forms of cancer,

2186
01:10:51.614 --> 01:10:52.995
and the chemo treatment

2187
01:10:53.015 --> 01:10:55.297
that we chose to heal him

2188
01:10:55.317 --> 01:10:58.601
actually caused his hearing impairment.

2189
01:10:58.621 --> 01:11:00.102
So I haven't been able to connect

2190
01:11:00.122 --> 01:11:00.402
with very

2191
01:11:00.422 --> 01:11:02.004
many families whose hearing loss

2192
01:11:02.024 --> 01:11:06.508
looks like mine is.

2193
01:11:06.528 --> 01:11:08.777
You'd like to know how to connect to families

2194
01:11:08.797 --> 01:11:10.212
like yours?

2195
01:11:10.232 --> 01:11:13.449
So, Stephanie, could probably respond to that.

2196
01:11:13.469 --> 01:11:15.551
But I'll start by saying that

2197
01:11:15.571 --> 01:11:18.821
every state based EHDI program,

2198
01:11:18.841 --> 01:11:22.358
contracts with or collaborates with

2199
01:11:22.378 --> 01:11:24.727
a family based organization,

2200
01:11:24.747 --> 01:11:26.161
those family based organizations,

2201
01:11:26.181 --> 01:11:27.563
many of them are Hands on Voices

2202
01:11:27.583 --> 01:11:28.330
chapters.

2203
01:11:28.350 --> 01:11:30.165
Many others are not,

2204
01:11:30.185 --> 01:11:31.967
and they specialize

2205
01:11:31.987 --> 01:11:34.770
in responding to questions just like that, 

2206
01:11:34.790 --> 01:11:37.206
they can, if you contact

2207
01:11:37.226 --> 01:11:39.108
the EHDI program in your state,

2208
01:11:39.128 --> 01:11:41.777
you can get the contact information off our website,

2209
01:11:41.797 --> 01:11:43.379
and they can direct you to the family

2210
01:11:43.399 --> 01:11:44.980
based organization.

2211
01:11:45.000 --> 01:11:46.749
And that family based organization

2212
01:11:46.769 --> 01:11:48.150
will help you to

2213
01:11:48.170 --> 01:11:50.953
find other families like yours.

2214
01:11:50.973 --> 01:11:51.387
Stephanie,

2215
01:11:51.407 --> 01:11:53.689
do you want to add something to that?

2216
01:11:53.709 --> 01:11:55.357
No, I think that's great advice.

2217
01:11:55.377 --> 01:11:58.460
And contacting the EHDI coordinator, they

2218
01:11:58.480 --> 01:11:58.994
you know,

2219
01:11:59.014 --> 01:11:59.361
we know

2220
01:11:59.381 --> 01:12:00.863
what's going on across the state

2221
01:12:00.883 --> 01:12:04.333
and we capture all the data

2222
01:12:04.353 --> 01:12:05.134
on every child that's diagnosed,

2223
01:12:05.154 --> 01:12:07.303
including the etiology, the reason.

2224
01:12:07.323 --> 01:12:10.172
So it's a great person to reach out.

2225
01:12:10.192 --> 01:12:11.273
And the family support

2226
01:12:11.293 --> 01:12:13.609
organizations also know

2227
01:12:13.629 --> 01:12:15.210
that if you have a children's hospital

2228
01:12:15.230 --> 01:12:16.011
at all,

2229
01:12:16.031 --> 01:12:18.213
we also are connected with them,

2230
01:12:18.233 --> 01:12:21.984
in our states and at Children's Hospital,

2231
01:12:22.004 --> 01:12:25.421
do you have a children's hospital where you're at.

2232
01:12:25.441 --> 01:12:26.555
Sorry.

2233
01:12:26.575 --> 01:12:28.290
Okay.

2234
01:12:28.310 --> 01:12:28.991
Well, anyways,

2235
01:12:29.011 --> 01:12:31.260
for all the people in the room,

2236
01:12:31.280 --> 01:12:33.662
you know, we do know

2237
01:12:33.682 --> 01:12:34.997
who's out there

2238
01:12:35.017 --> 01:12:37.099
and how the hearing loss is caused.

2239
01:12:37.119 --> 01:12:39.168
And any EHDI coordinator

2240
01:12:39.188 --> 01:12:39.735
would be

2241
01:12:39.755 --> 01:12:40.469
more than happy

2242
01:12:40.489 --> 01:12:41.870
to make that connection for you,

2243
01:12:41.890 --> 01:12:43.706
because it does make a difference

2244
01:12:43.726 --> 01:12:44.206
to share it.

2245
01:12:44.226 --> 01:12:47.843
Thanks for sharing  story and best wishes to your child.

2246
01:12:47.863 --> 01:12:50.779
Lisa is going to add just a bit.  Hi Nikki

2247
01:12:50.799 --> 01:12:51.680
Right Nikki? 

2248
01:12:51.700 --> 01:12:53.582
Yeah, we're so glad you're here.

2249
01:12:53.602 --> 01:12:55.417
And yeah, between EHDI coordinators

2250
01:12:55.437 --> 01:12:56.785
and the family Leadership

2251
01:12:56.805 --> 01:12:58.821
and Language and Learning Center,

2252
01:12:58.841 --> 01:13:00.756
we will be happy to connect you.

2253
01:13:00.776 --> 01:13:01.924
So I'll find you.

2254
01:13:01.944 --> 01:13:03.459
Don't leave the room

2255
01:13:03.479 --> 01:13:05.227
and we'll get your contact information

2256
01:13:05.247 --> 01:13:07.629
and even if we can't find a perfect match

2257
01:13:07.649 --> 01:13:08.797
in your home state,

2258
01:13:08.817 --> 01:13:11.667
we can also, you know, find matches.

2259
01:13:11.687 --> 01:13:12.634
This day and age,

2260
01:13:12.654 --> 01:13:14.203
this day and age virtually.

2261
01:13:14.223 --> 01:13:19.141
We can definitely get you connected.

2262
01:13:19.161 --> 01:13:24.613
Other questions?

2263
01:13:24.633 --> 01:13:26.982
Having Lisa up here at the mike with me,

2264
01:13:27.002 --> 01:13:28.384
I wanted to point out that

2265
01:13:28.404 --> 01:13:34.374
the average height of this panel is normal.

2266
01:13:34.394 --> 01:13:36.892


2267
01:13:36.912 --> 01:13:37.393
Okay.

2268
01:13:37.413 --> 01:13:39.495
If there's no other questions,

2269
01:13:39.515 --> 01:13:42.097
enjoy the reception next door,

2270
01:13:42.117 --> 01:13:45.100
you start up in about 15 minutes.

2271
01:13:45.120 --> 01:13:47.302
Please stay for the 25th anniversary

2272
01:13:47.322 --> 01:13:53.089
dance which is coming up right away.