ROUGH EDITED COPY
Utah State University - Casey Judd
EHDI-WILLIS
Providing In-Home Hearing Screenings: Lessons from Wisconsin
March 10, 2015
3:00 p.m. ET
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This is being provided in a roughdraft format. Communication
Access Realtime Translation (CART) or captioning are provided in
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totally verbatim record of the proceedings.
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>> We will start on time. This session is Providing
In‑ Home Hearing Screenings: Lessons from Wisconsin and I
am going to go find an interpreter, too.
We don't have an interpreter, do we? No. So my name is
Ann Pipes the moderator and I will get an interpreter. Do
you want to wait?
>> Does anyone need an interpreter? I will still get
one, but we can start.
>> If someone needs an interpreter, we can't start.
>> REBECCA MARTIN: My name is Rebecca and I work with
Wisconsin Sound Beginnings Program in Wisconsin. And today
we will talk a little bit about one of our programs that we
have at Wisconsin Sound Beginnings, which is an in‑ home or
in‑ community screening for babies who either didn't receive
initial screening or didn't pass their initial screening.
>> SUSAN PICIONE: I am Susan Picione and I work with
Wisconsin Sound Beginnings. As a regional Outreach nurse
specialist.
And I have been doing that for the past four years and I
do provide in‑ home hearing screens in addition to some more
things we will get to.
>> REBECCA MARTIN: Just a limit of a brief background I
also have some of our annual reports and looks like not
many of you so everyone can have one if interested.
Wisconsin Sound Beginnings has three regional Outreach
specialists that serve the entire state. So I am one of
those, Susan is one of them and coworker Jeanne was
supposed to be three or to present was the third family,
but she had a death in the family and had to leave
unexpectedly. We provide ‑ ‑ families experiencing barriers
to care. Barriers could be geographical, could be
linguistic, socioeconomic. We really don't have a criteria
for what barriers are acceptable or not. Kind of if they
are not able to get into care, we will try to find them a
different way. We received referrals from hospitals, from
midwives, occasionally from a family directly. We have a
WIC partnership Program so we alert WIC offices baby in
their clinic or care has not passed and they get
information about the family gets information about needing
follow‑ up care. So that family can call one of us directly
as well.
Also, I am pretty informal so if you have questions feel
free to shout them as a we go. Wisconsin Sound Beginnings
also has a lost to followup prevention protocol catching
cases if they didn't get follow‑ up care or not screened by
that one month goal father the 1, 3, 6 they end up in our
safety net so we do a series of phone calls, letters,
contact with the primary Care and midwife and hospital
anyone we can possibly find. Susan uses the immunization
record, I use WIC to figure out where the family might be
and get them back into care. Once we get a hold of the
family ‑ ‑ not into care we are is able to step in. One the
things we have been looking at is in 2012 we screened 56
babies and it's just gone up since then. In 2013 we
screened 70 babies. And for 2014, which is over yes, the
year is over, but the babies are still out there we have
already screened 135 and counting and that was as of
January and I know I have gone out and screened more babies
since then and so has Susan and Jean. We are really trying
to take a look at what's happening with this resource that
was supposed to be kind of the last point of care. That's
really kept increasing every year. Susan will talk a
little bit about her area. And if you have a copy of the
annual report, and you really are wanting to know what
Wisconsin ‑ ‑ it's there. Susan's area is the orangey color
there. It's funneled, are we both state employees? Yes
and no, the money comes through HRSA and CDC grant, but
funneled through different agencies. Susan is through the
City of Walk of And Jeanne is with a local county health
department, and USED organization in Wisconsin.
>> SUSAN PICIONE: My name is Susan Picione a public
health nurse been with the ‑ ‑ health department. As
Rebecca said I am the orange region the lower right‑ hand
side. It's very small location but it's very populous and
dense.
>> The county accounts for more than half of the births
in Wisconsin. The whole rest of the state is equal number
of births to Susan's region.
>> SUSAN PICIONE: So it's densely populated. We are
very diverse in terms of racial and ethnicity diverse. We
have a lot of urban areas the Milwaukee area and Racine
area places economically challenged. Sorry I am really
nervous.
So basically, I do receive referrals from the Wisconsin
Sound Beginnings as Rebecca had mentioned. We go through
our we track system and when babies are timing out and they
are at risk for lost to followup, we will follow those
babies. So I get alerted them and I also get alerted about
babies from local health departments at times, local WIC
departments, primary care physicians.
I'm sorry.
Let me back up one second.
If I can just start, again, with the referrals basically
getting referrals from Rebecca most often. Sometimes local
midwives will give me referrals and oftentimes I will get
referrals from the hospital birth units, sometimes their
equipment is down and not able to screen babies so those
babies would be at risk for not having an initial screen so
I will get those referrals on occasions from birth units.
In terms of locating families as I mentioned I have been
public health nurse for 20 years so a really vast
experience in terms of locating families so we use a
variety of ways.
I will utilize what information comes to me from the We
Track and in contact with primary care provider and WIC and
we have a memo of understanding with a WIC Program. So
that well does ease oftentimes communication and trying to
contact families. I am able to access them. We have WIC
alerts that get placed for babies. So I can contact them,
sometimes I actually meet families at a WIC appointment.
Sometimes I am able to use the buildings, just themselves
if a family really does not want a home visit. I am able
to utilize the WIC Offices and meet them there kind of like
as the middle ground. I sometimes do that with primary
care physicians offices as well.
We use the tried‑ and‑ true ‑ ‑ the Postal Service in terms
of finding change of address. Things such as that.
I do oftentimes make phone calls, letters and drop‑ in
home visits again much easier for me being to the smaller
denser area of the state. I can hop in the car and knock
out a bunch of drop‑ in visits within a short period of
time. Easier for me than my counterparts in the state.
When I connect to the family and introduce mice letting
them know the reason I am calling contacting them I am
discussing available screening options sometimes families
aren't even aware or didn't get the whole message that the
baby didn't pass the screening.
But more often than not they are aware so I discussion
available screening options to utilize traditional care and
go into our local hospital for that or they are is able to
do that. Families are often open to the home visits
themselves. The reasons people opt for that are varied. A
lot of times it's that just a work schedule thing a
transportation issue they might have lots of other kids at
home. They are unable take all the kids out to go to one
appointment. Weather sometimes being in Wisconsin, of
course, is an issue that we encounter. Lack of childcare.
Difficulty navigating through the system. They are unsure
of making these appointments. We do have some families
that are affected with mental health issues or physical
health limitations. AOD use, et cetera. In‑ home screening
does provide those services to them.
I then follow up with the families ‑ ‑ go ahead.
>> ( Inaudible ).
>> Depending on the age of child we do ABR.
Older than 6 months we do OAE. ( Inaudible ).
[ Off microphone ]
>> The question was, if we are doing ABR OAE and said
doing both, and if we are going to homes with a lot of
chaos how preparing families for that screen?
>> SUSAN PICIONE: Lot easier when you can make an
appointment. I know, especially in the rural areas parts
of the state it's not that easy to do that. They have ways
of doing that maybe by letter, especially with the Amish
population. For me I do, again, think it's a little easier
though people their change cellphone numbers daily, I
usually am able to hopefully make some kind of contact by
phone and talk to the family ahead of time and yes, you
want the baby to be as ready for a nap as possible. You
want the baby maybe to be fed as I get there and I am
explaining the process showing you the equipment. So that
is the baby is ready to take a nap.
You want to advise the family not to slather the baby
with junk food before you get there, because the stickies
do not stick. Things like that. If at all possible the
over children in the home, yes, if there's something else
to do or bring somebody else there to kind of watch over
there them, it's a little more helpful.
>> ( Inaudible ).
[ Off microphone ]
>> REBECCA MARTIN: Our ABR equipment is done at six
months. 0 to 6 months we will screen ABR and six months to
Susan I think has a record for oldest kid she has found and
rescreened and that was OAE and I think he was 1 ½. I joke
there's going to be having their own kids, good you are
still missing on my caseload and I still have you open.
So as far as getting ahold of families and trying to
explain what we are doing there that's ideal. I think that
rarely happens. I think that one of the skill sets we each
bring to the table is once we get in the door we are not
leaving and find something for the kids to do what do I
have in my bag? I have a notebook upon notebook filled
with scribbles from small children. Sometimes it's
uncomfortable, because parents are, like, what are you
doing again? This her and angry, even though they agreed
to let us come in. It's really just a lot of using those
social work skills using those interpersonal relationships
skills to get that baby screened.
>> ( Inaudible ).
[ Off microphone ]
>> REBECCA MARTIN: The question was about the alert we
mentioned. We have an agreement with WIC. So when I am
identifying babies at risk for lost to followup, I actually
go into the WIC System and I place ‑ ‑ they have an alert
box already there for their own things. So I place
Wisconsin Sound Beginnings alert. That says baby did not
pass screening; please contact, Susan Rebecca or Jeanne to
coordinate care. And that's really at any point the child
is deemed we haven't figured out where they are and other
ways so we put that alert in. ( Inaudible ).
[ Off microphone ]
>> REBECCA MARTIN: Absolutely or might go in at one
month and stays there forever and they are like can we take
it out yet? I don't know, have they been screened? No.
That's a little bit about Susan's region.
Then just a little bit about Jeanne's region it's
interesting. Jeanne's background is a parent of a child
who is deaf and hard of hearing and a parent guide for
number of years and also worked in the prison system and I
feel those things give her a good background for doing home
work. I don't know if she would agree or not, but the
majority of families she is Plains Amish or Mennonite and
done a lot of inroads for unassisted birth of in Wisconsin
so there's kind of these huge pockets up there who don't
have access to any screening. And Jeanne is actually
getting trained through the health department to do the ‑ ‑
integrating the screenings. If a family contact her, they
might be walking miles to find phone, if they get ahold of
Jeanne we would like blood screening too it's a different
person not anymore. We are getting so we can do both and
she works with a local midwife. She is already getting
calls from Amish community saying I had a delivery
yesterday, can you pick me up to do screening? Really
incredible. It's a pretty tight‑ knit community and they
have embraced Jeanne. Issued a funny story she had gotten
to a home baby was asleep screening her she woke up was
scared, because there was Amish baby woke up looking at
Jeanne so Jeanne written down I looked very strange and
foreign to some infants and our review process kept trying
to take out that sentence and I said no, Jeanne it's a
funny story. It's good to remember that we don't look like
everybody and they are not used to having strangers it in
their home who don't look like them.
The majority of screenings that Jeanne does are initial
screens. She still dozen some follow‑ up screenings and her
area is this whole thing here. They might be traveling 8
hours to find a baby. She also does some screenings in
tribal areas and then really incredibly rural areas of
Wisconsin, which is a culture unto itself.
And then get to me my background is also in home
visitation doing ‑ ‑ child parent relationship work. I do
the in‑ home screenings and I also co‑ parent/child ‑ ‑
post‑ diagnosis.
Do little bits of both things.
And I am the blue and yellow part of the state. Also
pretty huge area.
I don't screen that many babies compared to Susan or
Jeanne, but the hospital systems are doing a little bit
better, like talking about rates, ethnicity and geography
and it comes back to the healthcare systems in the area to
we tend to find our problems ones. I think a hospital in
one of areas that would have an incredibly high lost to
followup rate if not for Susan. Susan is their follow‑ up
procedure.
So really kind of trying to figure out how we can better
deal with that as well. Some of the impact of this. We
have increased our screening rate particularly among the ‑ ‑
western Region ‑ ‑ number babies never screened has gone
down every year. We were to be 2,000 now, it's less than
140‑ something had this last year. Used to be 200 ‑ ‑ last
year we reported looking at annual report ‑ ‑ we basically
86 kids we lost.
That's been really great.
We have ‑ ‑ families experiencing many barriers goals
mixes. We have increased collaboration between a lot of
different agencies. At the end of the day, our big
question is cost sustainability. As we say in the
beginning, we keep screening more and more kids kind of
look at where we are losing kids normally.
And at what point are we stepping in, what we are
collaborations could we have in place? Susan's area is not
as geographically distant, but Jeanne and mine are so we
are spending a lot of time getting to places. Some of
areas we have done a good job of locating other people who
can screen so the licensed midwives in Wisconsin have
access screening equipment so some who would be a good reel
regional person then we are, but only have OAE. Sometimes
butting up against best practice ‑ ‑ lost to followup or
doing OAE after ABR.
Really kind of trying to do that checks and balances
they were not going to go back. We have had a lot of
starts and stops with some of our other collaborations. We
had a clinic in one tribal regions who was interested in
doing follow‑ up screenings. And then they kind of decided
no, we don't want to deal with that so we keep trying to do
some of other collaborations in more distant areas. But so
far haven't gotten that as well as established as we would
like.
>> ( Inaudible ).
[ Off microphone ]
>> REBECCA MARTIN: I am full‑ time.
>> I work 32 hours a week and ‑ ‑ is Wisconsin Sound
Beginnings and other eight at the health department.
>> REBECCA MARTIN: And Jeanne is 0.6.
>> ( Inaudible ).
[ Off microphone ]
>> REBECCA MARTIN: Regular grant.
>> I was going to elaborate a little bit more than the
variety of home visits just at one extreme we have a baby I
got a referral at 9:30 in the morning one day. I was
already going out for a 10:00 home visit and I noticed this
child is a mile away in this child too close ‑ ‑ the phone
was disconnected, we will do a drop in. I went it my first
visit stopped at the second visit family was there. They
said sure this was great. After I explained the whole
situation and she said yes definitely in interested this,
because the baby was wide awake. Clearly not a good time.
We will give you a call. I am walking away 20 years of
home visiting and cynicism, yeah, sure they will call,
right? You have that little bit in the back of your head,
because there are challenges in home visiting. And they
actually did. Before I got back to the office they called
so I hurried back out there screened the baby and baby
passed, we are talking a three‑ hour turnaround time and
back that up with at that little guy was Anthony. This kid
is Anthony. Lasted almost a year. Not all the stuff we
encountered, but a 17‑ year‑ old mom with a 3‑ year‑ old and
this new baby. I called multiple times left multiple
messages a wonderful collaboration with this PCP, because
that PCP office to office called me back and said, mom we
will call mom and make a three‑ way call. We talked on the
phone. This was about an hour away from my actual
building. So we scheduled a visit. We went there mom was
not very forthcoming about a lot of information, but she is
17 younger mom little challenging in terms of the visit.
She didn't want to go to Milwaukee.
But we did work with the ENT to just get at least them
to check the ears first seeing what's going on there.
Multiple attempts to get that family in there they canceled
no‑ showed three times. Followed up with mom. That could
very well happen. I met her at Children's. I am not able
to drive people in my vehicle, but able to meet her at
children's so I went with her to the appointment mom not
that involved at that point I had already asked about
history of hearing loss, no, not really. There's an
aunt ‑ ‑ when we get to the audiology appointment there's 7
people in the family that have hearing loss.
Most notably mom. And during that time of all these no
show appointments with ENT ‑ ‑ lots different things come
up. That child ‑ ‑ ended up getting fitted with hearing
aids, but there was a little issue with that in that mom
didn't like her own hearing aids so she is wasn't having
the baby where his hearing aid. Again providing health
education and teach to them and trying to be supportive and
meeting them and she actually called six months after to
ask a question about her daughter with preschool and
things, even though I am not from her area, like, tried to
help other out what we do is meet them where they are at
and figure out other available resources for the family as
that comes up.
Unfortunately we have lost contact. I attempted to
contact the kid, two and a half almost 3 now. Kind of lost
track of them about six months ago. That's little sad.
Hopefully we did with a we could do.
>> And more. Susan is really pretty dogged. She gets
her stuff and gets it done. And one of the things that, I
think, is really important to note is that once you are
entering a family's home you are responsible for anything
encounter there and one the issues that comes up among the
3 of us, Susan and I have background in home visitation.
So kind of knowing the services in your area which isn't
always possible, because it's so huge and things change.
Really trying to kind of know is there a home visitation
program in that area? Who's the public health nurse in
that area? Prenatal care. Not every county does. I went
a home visit with a mom ‑ ‑ the hospital lost her. And I
found her through WIC and because she had moved so when I
got out there screened baby he did not passion I said we
will have to figure out where he can go here, do you have
his M.A. card? No, I haven't gotten yet. That's a problem
I ended up calling the state office, and got his M.A.
number. And then realized he didn't have any care
established so I ended up calling a clinic and establishing
care for him and in that conversation realized that mom had
not had a ‑ ‑ check, will not established care of her own in
her new area and she had no longer had her M.A. cards. I
ended up calling the clinical back and got her an
appointment as well. And helped her establish care and we
talked about birth control options, because we want on any
at that point and she wanted to be and she was
breast‑ feeding and to advocate with her doctor that she was
wanting to breast‑ feeding and continue to breast‑ feeding
and ended up making an appointment for the baby to get his
follow‑ up care at the audiology, because they wouldn't make
an appointment until he had been seen by primary carry by
the time I left they each had appointments. You call me.
If that doesn't happen. She and boyfriend ended up taking
her in and was within normal limits I think it is you have
to have the knowledge and wherewithal to figure out some of
the problems you might encounter and also kind of your
safety and liability too if going to a home you know what
it doesn't seem safe, you don't go in. You step back and
call your supervisor. You bring a coworker if possible.
Susan being at the City of Milwaukee has ‑ ‑ coworkers to go
with her.
>> One quick comment. You had mentioned about the kids
in the home and yes, you become like a jungle gym and
sticky fingers. I had a kid karate chop me. The one is
that stood out was the dog home visit and a big German
shepherd there every time I went to touch the baby the dog
growled. Every time it was just ‑ ‑ and then we kind of
established that okay, Mom talked to the dog, and she never
agreed to put the dog behind a door wasn't a door other
than a closet, baby gates galore, but no shutting doors. I
was okay as long as mom was there, but all of a sudden the
doorbell rang and he wanted to run after her don't leave me
here with the dog and baby. Things like that randomly come
up.
>> REBECCA MARTIN: I was doing a screening at Amish home
and I don't do those that often putting kids in back she
came running out of bathroom spigot was open ‑ ‑ I don't
have to idea what do. All kids were there like from 3 to 7
all naked, and this is Amish home ‑ ‑ plain people so okay.
I am just going to pretend this is normal and normal. Kids
never took a bath or got dressed ‑ ‑ Amish kids running all
over me all still naked none of them speak English. I was
just like this is fine. I will laugh my ass off in the
car.
And so it was any of numbers things. It was really we
got kid screened mom was joy to work. I think kids
eventually got dressed after I left. You never know what
you will encounter.
>> I have learned you can plan all you want, but the
babies run the show. Any other questions? I think our
time is up.
>> Thank you.
[ Applause ]
[End of session]
[ End of file ]
* * * * *
This is being provided in a roughdraft format. Communication
Access Realtime Translation (CART) or captioning are provided in
order to facilitate communication accessibility and may not be a
totally verbatim record of the proceedings
****