ROUGH EDITED COPY EHDI CONFERENCE

Colorado State EHDI Team: Building a System to Improve Outcomes for Children

9:40 A.M. - 10:40 A.M. (ET) FEBRUARY 28, 2017

* * * * * CART CAPTIONING PROVIDED BY:

ALTERNATIVE COMMUNICATION SERVICES, INC.P.O. BOX 278

LOMBARD, IL 60148

* * * * * This is being provided in a rough-draft format. Communication Access Realtime Translation (CART) is provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings.

* * * * *

outside Building a System to Improve Outcomes for Children

>>SPEAKER: Good morning, everybody. We're going to get ready to

start. This morning's session is -- good morning, again. This morning's

section is Colorado State EHDI Team: Building a System to Improve

Outcomes for Children.

And each speaker will introduce themselves. So I hope you enjoy the

session.

>>DR. THOMSON: Good morning, I'm the principle investigator the of

the MRSA EHDI grant, and we're going to talk about today how we all work

together to improve outcomes in Colorado. My name is Vickie Thompson.

And why is this not advancing? Hmm.

Oh, there we go.

So today we're going to talk about how parents support the work of

connecting parents to services. We have our Chapter Champion,

Dr. Maureen Cunningham who is going to talk to you next act how she works

with our EHDI team to provide education to physicians, and you will also

learn how we as a state EHDI team try to build comprehensive systems from

screening through parent support.

I don't know. It's this button.

I could probably still screen babies in my sleep but I can't figure out

this technology.

>>DR. CUNNINGHAM: Hi, everyone. I'm Maureen Cunningham. I'm a

pediatrician at Children's Hospital Colorado, and I'm the AAP Chapter

Champion for Colorado. I started at -- I took over as AAP Chapter Champion

a little over a year ago from -- those -- from Al. He had been a Chapter

Champion and helped start the EHDI program in Colorado, and apparently

does phenomenal cowboy poetry which I also can't do, so I kind of just

jumped in and tried to do the best I could working with this team, and

they've actually made it very welcoming and very easy to work with,

everyone seated at this table, and everyone who is involved in EHDI in

Colorado.

I'm going to talk about three things is that I do as Chapter Champion:

Research, quality improvement, education and outreach, and I also chair the

Colorado Infant Hearing Advisory Committee.

I actually got involved with the research aspect before I became

Chapter Champion. I did a primary care research fellowship after I

completed my residency, and my project was looking at loss to follow-up in

Colorado's EHDI system. I was interested in this because I'm actually the

child of deaf adults and so providing care to children who are deaf and hard

of hearing has -- does have personal significance for me, and it's always

something that I wanted to get involved in every since I started medical

school.

So basically the research project I -- I did was I looked at data from

the -- our integrated data system at children who failed the inpatient screen,

and then were lost -- I looked at lost to follow-up for follow-up screening,

diagnosis and entry into early intervention.

We also, along with Erica and Vickie's support -- Erica was our EHDI

coordinator. She's no longer with us. They sent out a survey to all newborn

screening hospital coordinators and we wanted to identify what they were

doing, and if they were really complying with -- both our state guidelines and

recommendations from NCHAM.

This slide is really hard to see, and this is not a presentation about my

research at all. But some of the results I found, some were not surprising

that we had increased loss to follow-up for teen parents, parents who were

minority, particularly African-Americans, parent who were unsured or infants

Medicaid, infants born to parents with lower education, maternal smoking

and parents who had more children.

Interestingly, and I think that this is a good thing. Other states have

done similar evaluations and found that there was higher loss to follow-up

among Hispanic parents versus white, non-Hispanic parents, and that was

not significant in our state.

We did a little bit of looking at what the -- both completion of newborn

hearing screening and newborn -- completion of newborn hearing screening

by one month. Really, the on-time completion was only affected by

insurance, maternal education, significantly associated with rural versus

urban residence.

Birth weight, other kind of craniofacial anomalies like cleft lip and

palate as well.

For quality improvement, about a year ago I did do a quality

improvement project with our state EHDI team where we took all kids who

are twice failed so were referred so they referred the inpatient screen, and

outpatient screen. But were loss to -- to follow-up for diagnosis, and I took

three months worth of babies who are fallen into this category, and made

phone calls to their PCPs and sent faxes and I made a phone call one month,

and a fax and a phone call, and we found that when I was able to make the

phone calls, about half the losses were due to errors, lost documentation,

and the other half was due to -- for the most part, due to PCP's having made

a referral but then not following up with the results. So those were our major

losses in that QI project.

I did get maintenance of certification credit for that, so I had to do a

run chart which isn't super informative. It shows that our loss to follow-up

rate decreased when I actually called the PCP's but that's not exactly

surprising because I was able to call them and find out what happened.

A couple of them said I didn't know I was supposed to refer, and then

reserved at the time I made the contact, and they were all very accepting of

the call. I know Chapter Champions from other states and other states are

routinely doing this which I think is great.

I've also seen Chapter Champions get involved in a lot of other ways

and I've met amazing champions just at this meeting alone who have been

significant in moving forward legislation and follow-up.

For education and outreach, I've given a couple of talks. One was to

Colorado Children's Healthcare Access Program. We did a Lunch and Learn

last March. I did grand rounds at Denver Medical Health Center to both

residents and providers there. I've repeatedly been able to get more

involved with our state AAP chapter, and that's just because there was a

change in leadership at the state level. So I'd spent many, many, many

months trying to get in touch with the AAP without much success, and then a

new Executive Director took over, and she reached out to me, and it's been

phenomenal since then. I've had a great contact with her. I was able to put

out some 1-3-6 information in the January newsletter. We tried to set up a

webinar for early this month, and I didn't get enough interest, only one

person replied so I didn't get enough interest to actually have the webinar,

so that's a challenge that we're going to have to face now is just drumming

up interest among our chapter membership which is mostly community

pediatricians in EHDI issues.

I was able to add a bunch of links, including the AAP EHDI resources,

Hands & Voices, EHDI pal's to the website so pediatricians can look up n

resources, and they're having an annual meeting in April 2017 where they

said they'd kind of give out some EHDI brochures and information to their

members, although we weren't invited to speak. I think if we can drum up

enough interest among membership maybe next year it can be on the

agenda. More exciting is every single one of these in-person presentations I

found it very helpful to have Vickie or Erica or our EHDI coordinator who is no

longer with us there to kind of help field the questions because I feel like

they often had a lot of information that I can't provide, and I think having

other stakeholders there, including parent representation, like Hands &

Voices or representation of the CO-Hear's like Dinah would be an even better

addition to any presentation. So we're right now looking at doing a learning

collaborative where as a group we go and do presentations and outreach,

to -- to pediatricians and -- I'm going to let these ladies talk more about that.

The Colorado Infant Advisory Committee is actually mandated to

provide recommendations to hospitals, healthcare institutions and the

Colorado department of Public Health and Environment. And as the AAP

Chapter Champion I'm the chair of that group, although I don't feel like I do

most of the work of the chair. I feel like other people do that, including Erica

before she left and Vickie. But we meet quarterly and it's a great

opportunity to get input from other people on our activities and find out what

other people are experiencing, other EHDI stakeholders are experiencing in

their interactions with primary care providers in the state, where our

weaknesses are.

It lets me also network with other stakeholders in a way that I probably

wouldn't in my regular daily practice. I'm a hospitalist, so while I'm involved

in the initial stages of newborn hearing screening in the nursery, I'm not

clinically involved in any of the follow-up in general. So this is a good way for

me to get some face-to-face time with the people who are providing services

to children who are deaf and hard of hearing and finding out where they feel

providers could use more education.

And that is my part of the presentation. Thank you.

>>SPEAKER: I'm just going to talk a little bit about our 1-3-6 and talk

about mostly the audiologists. What we're going to continue to do right now

with our funding is work with hospitals and midwives to make sure that they

are screening and reporting into our EHDI integrated data system, provide

best practices and support to ensure that infants who do not pass the screen

at discharge receive an appointment for an outpatient screen.

Audiology, we have developed new -- best practice guidelines. As soon

as I get back from EHDI I will be sending that out to all the audiologists who

enter data into the EHDI integrated data system. We are really focusing on

the importance of that immediate referral when they suspect a hearing loss

to our Colorado hearing resource coordinator, and Dinah will be talking about

that, because we're finding that sometimes audiologists are waiting until

they have every little degree of hearing loss pinpointed, and that can take

quite a few audiology appointments. But if they suspect right away that

there is a permanent hearing loss, we can get them into early intervention

and connected with Hands & Voices for parent support. We continually are

having to remind audiologists to please submit data, especially for the ones

that they see and that they deep to have normal hearing. We think that is a

big part of our loss to follow-up is actually loss to documentation.

We are starting to be more assertive in encouraging families and

providers to report audiologists who do malpractice. We have several

audiologists in this state that repeatedly misdiagnose infants, and they end

up being late identified or we've even had the situation where they've fit

them with hearing aids only to find out that they have normal hearing.

So we're going to really start cracking down on this.

The other thing that we're looking at, we have been able to provide

teleaudiology for an audiology in a rural state that turned out to be amazing.

She was nervous about being a pediatric audiologist but after she got trained

she now has one of the largest pediatric rural populations in the state and

does an amazing job for those families so they don't have to travel 7 or 8

hours to Denver.

We are going to be looking at teleaudiology, also on the other side of

the mountains because it seems most of our diagnosing audiology are what

we call the front range, Denver and Colorado Springs. So we'll be looking at

trying to get more audiology, teleaudiology, so we have good audiologists

that can serve families, and I'm going to send this over to Dinah Beams.

>>MS. BEAMS: Hi, everybody. I am Dinah Beams. I am the program

coordinator for the Colorado Home Intervention Program at the Colorado

School for the Deaf and the Blind.

So I'm kind of the eye of the EHDI -- I piece of things in EHDI.

In Colorado when an audiologist confirms hearing loss with a child,

they refer to the regional Colorado hearing resource coordinator. So we

have nine coordinators, each one live and work within a designated region of

the state. Don't know how it is in your world, but in my world, in our

mountain communities or out on the eastern planes, people get really

desired of how we do things in Denver. Okay? So the fact that we have

coordinators who live and work within those regions, who maintain

relationships within those regions, who get what life is like if your house is 45

minutes down a dirt road because they also live 45 minutes down a dirt road

in the mountains and are having to dig out in the morning, really gives a lot

more credibility to the system. So I think that's a strength that we have that

these coordinator in these different regions.

So the audiologist contacts the coordinator. The coordinator then has

the responsibility to make that initial connection with that family. When you

sit down in the family's liver room or at the kitchen table, or on the floor and

you're petting their doing you can have a different dialogue than you can

have in an office. Things are mentioned that may or may not be mentioned

in that office with that audiologist. So we're that person who makes that first

contact with the family who goes in and talks to them.

We also have the responsibility to connect our families with our

Community Center Boards, our CCB's, and in our state that is our local Part C

group. So that's what they're called in our state. I realize everybody has

different acronyms.

We also initiate the data management in terms of our piece of things in

our state database. So what does this visit give to the family? Why does it

matter? First thing we give is information. All of our CO-Hears are highly

trained individuals with expertise in Early Childhood Hearing Loss. So we've

all got a lot of years of experience under our belt. We've met many a family.

So we're really talking with them about the impact or the potential

impact of their child's hearing loss and also about their communication

development. We offer technical support. Again, we're in that home within

a few days after the child has been diagnosed. Typically the audiologist

contacts us the day the child is diagnosed. So we are in the home before

they've received hearing aids. The parents at that point in time have a lot of

questions, and one of their questions is, you know, they're sitting here

holding this baby that's 6 weeks old, 8 weeks old. How do they really know?

How do they know from these tests they've done that my child is really deaf

or hard of hearing? How do they know?

So we have a chance to talk with them about the tests that have taken

place and the tests that are yet to come. We provide emotional support to

that family and I've highlighted or put in bold that we provide connections. A

lot of what we wanted to emphasize in this presentation is this connection

that we have at the state level, at the local level, between all the different

stakeholders. So part of my responsibility when I meet that family is to talk

to them about how the different connections within the community that we

can provide. Things they didn't know was there. And I tell them when I

arrive, in your perfect world, you would not know I existed, and you would be

very happy with that. And the fact that as a professional I'm sitting at your

kitchen table is proof that in your world, all is not as you thought it would be.

So I just label that right away and it's interesting. Sometimes

parentings smile and sometimes they nod their head, but they acknowledge

that, yeah, that's true. Grateful for your help, but the fact that you're here is

proof that my world is not quite what I thought it was going to be when I was

expecting this baby.

Then we have in addition to these Colorado hearing resource

coordinators, which is our system connection piece, we as coordinators have

a responsibility to connect the family with our Colorado Home Intervention

Program or CHIP, and that's our state outreach program. One thing we have

in Colorado that's a little different from other states have is we have a

statewide family-centered in-home family intervention program where all of

the people who work in this program are highly trained with expertise in the

area of early childhood hearing loss, and they have all have master's

degrees in either deaf education, speech pathology, a few audiologists in the

program but most of the providers are either teachers of the deaf or speech

language pathologists, so we serve virtually every child in the state who is

deaf or hard of hearing. They're all eligible for our services, so currently we

serve in any given month we're going to be serve between 325 and 340 in a

state.

A family, of course, always has the right to decline services. That is

their right. We are unbiased. We offer all communication options to the

family, and that, again, gets back to some of that information that the

CO-Hear's chair on that initial visit. So we kind of have these two different

things going on. We have the CO-Hear coordinator who is that connection,

that first person in the home, the person sharing this initial information about

communication options, about services and supports in the community, and

then once the parent makes a decision, the second piece of this is the

Colorado Home Intervention Program or CHIP which is the actual service

delivery model for these intervention services.

The other thing I need to emphasize about the service delivery model

is that it's a data driven approach and has been for years and years and

years. We have always felt that it was really important to know what our

kiddos were doing in order to determine next steps and how we could better

support them. So we have a comprehensive assessment we've been using

for over 25 years that looks at all areas of development, but particularly

focuses on communication, and we do that every six months.

So one thing I wanted to talk about a little bit today is this idea of

closing the loop. And this gets back to this idea of collaboration and

relationships. So we have connections, like I said, at the state level as this

group here is exemplifying that and our Colorado Hearing Infant Advisory

Committee exemplifies that, but we have connections at the local level. So

the Colorado hearing resource coordinators are connected with the pediatric

audiologists in their community. They are connected to the child fund

coordinators in their community. They're connected to the Part C

coordinators and even in this age of technology, I guess I'm old school

enough to still believe that a lot of things come down to that relationship and

that trust.

So part of what we have to do is we have to make sure we close the

loop. If I expect an audiologist to refer a child to our program, I need to be

respectful enough to get back to that audiologist and let them know what's

happening. We've got the child plugged into services. It's not fair to expect

them to keep referring and then not go back to them and say, okay, this is

what's happening. So it really gets down to this teamwork and that the

families know that we have this seamless system.

So we really are working with our other professionals that are serving

these families and sharing outcomes and sharing our concerns and

discussing our questions and differences.

And I say our differences because does it really help a family if they've

got multiple professionals in their life, and we're all telling them something a

bit different? So we say conversations kind of behind the scenes I feel like

strengthens the system as a whole.

And I've already pretty much talked about who the Colorado

coordinators are.

So, again, collaborative partnerships are really vital to everything that

we do. So we have to make sure that the program coordinator, myself that

I'm connected to everyone at the state level, and that my Colorado resource

hearing coordinators are connected to the people at the local health. Public

health, child find, Part C which is early intervention Colorado our state.

Hands & Voices, University of Colorado which is the entity that works with us

on our assessments.

And then going back CHIP -- because I'm kind of flipping back and

forth. Going back to CHIP, we have, again, it's a community-based model,

and it has a system for honoring communication choices of the families. We

are going to make sure that we are going to connect families with parents for

Colorado Hands & Voices and also with deaf adults.

And the last thing I kind of wanted to talk about before I turn this back

over to my colleague -- to Sara, I think, who is next -- is this whole idea is is it

a bottom up system or top down? And I feel like it's a bit of both. So if I

have an individual family that raises a question, a concern, something that's

not working for them, I need to kind of take that up the chain to see if this is

something we need to deal with at a system level. Perhaps this is something

that is indicative of a larger issue.

Conversely, there are times when as a system at the state level we'll

talk about something that I need to make sure trickles down to my early

interventionists and everyone that's in the field. So it's kind of a

communication moving both ways, but a lot of times the issues that we end

up tackling at the state level originated with an individual family and then we

find out there's more than one family dealing with that, perhaps, this is

something that within a particular region that we needs to address. So we

have to kind of take this up and down the chain.

>>SPEAKER: This is like talking to a long hallway of people. You're all

just way back there. I was curious. Who all is in the room? So I see a

parent. Any other parents in the room? Just you, Janine.

How about health department folks? That's our majority maybe.

Audiologists?

Teachers of the deaf?

Early interventionists?

Hearing screeners? Okay. So mostly health department people.

These are your folks, Vickie.

So I wanted to share a little bit about the parent-to-parent support in

Colorado. We've been very lucky to have a 20-year history, the three up itty

moms who started Hands & Voices from 1996 were from Colorado so we're

the mother ship of the organization.

We do have an active Guide by Your Side program. These aren't even

all the pictures but we have folks in every region, like Dinah shared. It's very

important to us to have people living in the region that babies come from.

And that is challenging for a nonprofit that's pretty small to try to serve an

entire state. So we do have these families from a variety of backgrounds.

These pictures represent families who have had preemies, who've had

children with other conditions or situations affecting their learning, late

identified babies, babies who've met 1-3-6 perfectly and like poster kids, so

that's good to have, too, kids who are microatresia, unilateral hearing, kids

who use ASL, who use spoken language, who use both. We have folks who

use cued speech on our board but not on our Guide by Your Side staff.

People who are late identified or did not have early intervention at all, and

that new guide has a incredible story about the difference between having

HER2 2-year-old who was identified early but never referred tore early

intervention, and now her 8-year-old who went through the 1-3-6 pretty --

just like we wanted to happen and had so much more support in the same

family. So it's an interesting story.

These are carefully selected parents. They go through an interview

process, and an application process. We want to make sure that a parent is

able to support families with different stories. If we all only supported our --

the one way that our child is being raised, then all the families in Colorado

would look just like mine, and that's not the case, of course. So I think that's

a measure of our quality of service, that we can support families who choose

much different methods, different school situations, live in different areas,

rural or urban, and they still feel supported.

We also felt it was very important to connect families with deaf and

hard of hearing adult role models. Our School for the Deaf reached some

difficulties in a state legislative kind of way where they had to ask each of

their individual contractors to have their own business, and that was difficult

for many people to do. So at one time we actually paid them through our

Hands & Voices nonprofit as a -- not a contractor but we just flowed the

money through us for that one year. And that worked well on our side, but

not so well on the School for the Deaf side.

So they've actually moved towards kind of a video library of compelling

stories from a variety of deaf and hard of hearing adults, and that is great to

have as a resource, but we also wanted to still have that personal connection

that families can meet, a variety of deaf and hard of hearing adults, at

events, have them to their home. Maybe even have them attend an IEP at

some point. So we created a pilot called the partner project. We have one

coordinator who is deaf herself, and then five contractors under her.

Obviously five is not enough to cover the whole state, but they can travel up

and down the front range and talk with people via video conferencing or

phone if they're outside of that reach. And we try very hard to have deaf

and hard of hearing adults at every event that's sponsored by Hands &

Voices so I wanted to make sure we talked about that.

So a parent has a guide visit. Our most common referral is through the

CO-Hear system, and that may be at the time of getting the hearing aids or

even earlier than that, and we know that it's important to continue that

parent-to-parent support through the whole 1-3-6 of EHDI, and on. At

Colorado Hands & Voices we support families from the time of identification

or even before up through age 21. So how do we stay connected with those

families?

Well, there's a couple of ways. We -- any family who wants to can be

on our mailing list, and they get it four times a year, a newsletter that's

mailed to all families. There's no charge for that. Of course, if they strike oil

in their back yard, we're happy to take a donation.

We also do a monthly eNews, and we're starting to wonder how do we

need to change this up because not everybody is reading their email

anymore, but that's still available, and we publish not just our own events

but any events or information that's coming through any organization in

Colorado. It's not up to us to decide that our information is the only thick

they should have access to. So that's a way to keep families connected with

what's going on in the world.

And we also hold one or two regional events so people don't have to

travel to Denver. Of course there's a ton going on in Denver, so if you were

to travel there's something going on about every other week. So there's

that.

Janet talked about in the opening plenary that she wished there was

1-1-3-3-6-6 for each point of the EHDI continuum that we connect parents to

other parents, and I would have to agree. You know, we run into questions

that families just don't ask the professionals, not just, you know, how do we

know that the hearing test is valid, but how do we know the hearing aids

aren't hurting their hearing? Have you heard that and concern from fathers

who are not always able to attend appointments who, you know, maybe

don't get addressed. So we like keep connected -- keep families connected.

So we have a new database. Ideally Hands & Voices would be

connected to the EHDI database. We'll talk about that.

I need to get a drink of water.

But we have an internal database where we're finally getting some real

tracking of numbers, so we had 73 families in the Guide by Your Side

program last year, and that's just the birth to 3 population. Of those

families, 14 found us themselves either on Facebook, on our website or

through connections with other families. So that's nice to see, that, perhaps,

we're catching some of the families who might not otherwise have been

referred or -- or been referred as quickly. And we've definitely had those

phone calls from those families as they leave the hospital, looking at their

parent road map that might have been given in some of the hospitals in

Colorado, and if you flip over the back side it says who to contact for

information, and we will get a phone call right there. Nine were contacted

for advocacy support. We do provide ongoing advocacy support in schools

and communities. 34 were referred by early intervention. 7 were other

professionals and the remainder we actually found at some events. And

sometimes it's a school event that a parent guide is attending for their own

child, and they meet a new family.

So of those families, four were late ID. 3 had progressive loss, 4 to late

to follow-up so they were identified early but they were not entered into

early intervention in a timely manner, and three had lot onset or were

adopted.

And we had a couple of screening errors in the hospital. So loss to

follow-up. We're still in contact with one who hasn't yet started early

intervention, so I'm in contact with that mom and n trying to encourage her.

She's been through the diagnostic part but still hasn't started early

intervention. You know, the grandma is all for it. We've connected, but I

haven't yet convinced that mom in my own area to enroll and get going, but

at least she's not completely lost. We'll keep working with her.

And then one family in my area left altogether and moved out of the

area and is kind of hiding from early intervention. They have a new

diagnosis of autism, so hoping that they will come around.

But this is the personal connection that the Guide by Your Sides have

with the parents that they meet.

So next steps. Like I said we would love to have access to the EHDI

database. Given that that's not going to probably happen this year, we are

looking at and have written into the next grant shared position between the

CO-Hears and Guide by Your Side where that person will have access to the

EHDI database and facilitate referrals happening more quickly. We'd like to

see a much higher percentage of referrals from that system.

We have a new guide hired just before I got on the plane who has a

child with CMV who was tested positive for CMV and then later had the later

onset hearing loss. So she'll be a great support for families statewide with

that issue but also in her northern Colorado region.

In the southern part of the state we don't have enough families who

live there to justify having a guide even at a small number of hours, but

we've located two really enthusiastic parents who live in that very rural area.

I mean, it's like a frontier area who are going to be contacts for her families.

So we're calling them ambassadors. So that's our plan for that.

And new on the block is the idea by a nonprofit called Bright by Text.

They've have invited us to write text messages that any family can sign up

for based on the birth of their child, and we can customize messages

prenatally and after the child is born. That they get two or three text

messages a week, and we can things in hearing screening. How do you

know your child is hearing? And there will be a link to whatever web page

we feel is most appropriate. So that will be a great way to reach some of the

general population. Don't you wish we could get families to ask not just wait,

you know, what time was my baby born, and are there ten fingers and toes,

but how is their hearing? We just can't seem to get that in the general

population yet so know that that's a question that they should be asking.

We also -- besides parent-to-parent support, we want parents to be

impacting the system. So we'll be collecting more formal data as we develop

our database. We are looking at if some of you attended the Guide by Your

Side session yesterday, looking at some family learning outcomes that

researcher Sheila Moody has suggested. It's a whole construct of what

families need to learn becoming the supporting parent from being the

learning parent. So how do we take a family with that new baby in their

arms? What kinds of things do they need to learn to then be able to turn

around and support other parents? So it's some really exciting things. It's

based on well-being and knowledge and advocacy are the three main areas.

Finally, we are re-doing our resource guide that's available for all

families. It will be released next month, and we're considering how to do a

little plan, do, study, act on that resource guide to make sure it's giving

families the information that they need. I'm really excited to share some of

the new information we've got in there. We've updated it to include

microatresia, a little more on unilateral hearing loss, more on deaf plus which

wasn't specifically mentioned in the past version and we've got some nicer

diagrams and that sort of thing.

And then also a little chapter -- a little page on our children's safety.

You know, we know our kids are more at risk for abuse, neglect and even

bullying, and why not let parents know right away what they can do to

support their kids.

So I think with that we'll give Vickie a chance to wrap up, and then you

can be thinking about your questions.

>>DR. THOMSON: Well, Sara did not give herself and Hands & Voices

enough credit. Hands & Voices has developed a wonderful video called Loft

and Found and if you haven't seen that or have your hospitals aware of it, it's

a very nice video that has parents encouraging other parents not to be

scared of a failed hearing screen but rather to go through with the

recommendations. And we have encouraged our hospitals to share that with

families for any infant who does not pass their hearing screen.

Also, Hands & Voices has a road map for families in Colorado, and I

don't know if it's nationwide or if it's just our state.

>>SPEAKER: (away from mic).

>>DR. THOMSON: You can go to the Colorado Hands & Voices

website, and we've had it customized for every hospital in the state so when

an infant does not pass the newborn hearing screen the family can receive

this road map and they can even -- on the back it has resources but they can

go on the Hands & Voices website, and there's interactive road map on that

as well, so we find both these resources wonderful for our family. The

trouble is getting hospitals to remember to do -- to share these resources.

So we have had some challenges recently in Colorado. The EHDI

program moved to the birth defects registry, which we're excited about and

we're looking at that as an opportunity. What has happened is our state

attorney general has interpreted our statute -- statute that the health

department doesn't have the statutory authority to do any follow-up past

that initial screen and as you can imagine we've been working on EHDI since

1992. So we've had 25 years of building the state system, and the last 17

years with CDC grant funding to make sure that this is all easily accessible to

providers. The CO-Hears, the audiologists, hospitals can enter information

directly into the EHDI-IS, and so now we're going to have to go back to the

legislature and strengthen our statute.

When we first legislated in 1997, you know, we just wanted to get

something passed. We were the third state. We just wanted hospitals to

screen. Because of the data coming out at that hospitals that were screened

those infants were identified early that were screened. And hospitals that

didn't screen infants were identified until 2.

And they had research on language outcomes.

So that helped us pass the legislation, but it was unfunded. It didn't

have strong language in there, but we recognize with the weak statute at

some point this bomb might fall on us, and it has.

So now we're taking the you attitude that sometimes things just have

to crash and burn and then we can resurrect it again. I had a wonderful

conversation with the director of vital records yesterday at the health

department, and it looks like we're going to be able to work together to

really help keep the database intact and to move forward with stronger

language and go to legislature right now to try and increase our statutory

authority with the health department.

Excuse me.

>>SPEAKER: We're all getting a cold here because we hang out too

much together.

So one of the things that Colorado always has had challenges with is

the lack of resources. Because it is an unfounded -- funded mandate we only

have the CDC funding and HRSA funding. We used to have block funding at

our state health department and as most of you know at state health

departments that MCH money has continued to dwindle and thus they took

away the money for the EHDI program because it was no longer one of the

outcomes for the MCH block grant.

But our strength is what you saw today and that we have an amazing,

amazing EHDI team that works together every day practically just in texting

and sharing information and making sure that our families don't fall through

the cracks. And that is what has really strengthened the Colorado EHDI

system is our advisory committee, working together to develop guidelines,

best practice guidelines for hospitals, for audiologists, early interventionists

and for parents and primary care physicians.

We're looking forward to having Dr. Cunningham with us to be able to

provide more outreach education. Dr. Amal was fabulous, but he was a

full-time clinician so Maureen will be able to do I think a little more outreach

and we're really excited about that.

As I mentioned we're going to seek legislation, and as EHDI

stakeholders, we're going to continue to do whatever we can, because we're

also passionate about this, and of course, coming from the state where

Marion Downs started newborn hearing screening in the 1950's, we're going

to still live up to her expectations of don't shut up and live. She wrote a

book called "Shut Up and Live" but don't shut up and live, make our voices

heard for families in Colorado. So I think that's all for us.

Are there any questions?

No?

Quiet group. Do either of you have anything? No?

>>SPEAKER: (away from mic).

>>DR. THOMSON: That was the scare that we thought we were going

to have. But the health department will continue to have the database and

they'll help support us in moving forward with stronger statutory legislation,

so that they can continue to maintain the database all the way from

screening through early intervention. Woo might have a little gap. We're

hoping not but we might have a little gap.

So who would have thought? You know. Marion Downs. But it's going

to be okay.

Anyone else? All right. Well, thank you very much.

(APPLAUSE)

(END OF MEETING)