ROUGH EDITED COPY

UTAH STATE UNIVERSITY – CASEY JUDD

EHDI 2019 – TOPICAL SESSION 4 & 5 – INTERNATIONAL F
MARCH 5, 2018
10:10 A.M. ET

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	(Writer standing by.) 
>> SPEAKER:  While we're waiting, I'm Karen, I'm your moderator.  You are in follow‑up and support for families, creating a family‑centered loss to follow‑up system.  Please remember to turn in your evaluations.  Thank you.
>> SPEAKER:  Can everyone hear me?  Yep, I guess you can.
(Laughing.) 
>> SPEAKER:  Um, welcome to our presentation.  I will do a little introduction.  At the end, we have Anne Banger, who's the follow‑up coordinator for the Maine Newborn Hearing Program, Karen Hopkins, next to her, director of Statewide Education and Family Services in Maine.  Tonya Ng, which is our parent consultant for the Maine Newborn Hearing Program, and I'm the program manager for our Maine Newborn Hearing Program.  So, we're going to give you a little bit of history about EHDI and Maine, and this was before my time, so it's a little weird to present some of the history, when I wasn't here, but, so, bear with me.  Um, so, we started, um, screening newborns in Maine in 2000, and in 2005 was the first year that we did full hearing screen data that was collected in Maine.  So, as you can see, we have our screening data, our follow‑up, and our part C data.  Um, the importance of the parent role was identified, the parent consultant position was created, and it was funded by the HRSA grant.  And then in 2007, our parent consultant was hired.
>> SPEAKER:  This is a contract position, it's part‑time, it's home‑based, it's basically, um, a parent supporting the families following diagnosis, um, help to start the Hands & Voices chapter in the state of Maine.
>> SPEAKER:  Also, in that, in the same year the parent consultant was hired, the law changed in Maine that mandated audiology reporting, so anyone performing screening or diagnostics through the age of 3, and then the reports were submitted via web form or manually, and so you can see how our data improved from 2005 to 2007.  A pretty big jump in some of the areas.  Um, in 2009, our law changed again, mandating hospitals schedule follow‑up appointments, and in 2010, our follow‑up coordinator position was created.
>> SPEAKER:  So, the follow‑up coordinator position was created, and that was a full‑time contracted position and a parent, and at that time, the role was to contact the PCP and the audiologist when a child referred on the hearing screen.  We're just getting used to who's doing what here.  Um, in 2011, a new parent consultant was hired, and the focus shifted to include follow‑up with parents, which wasn't happening before, so you can see in the data, um, each year, the different changes that were made and the improvement in our data numbers as we went for follow‑up and for part C, and then in 2012, the new follow‑up coordinator was hired, it's me, and it became more proactive case management, actually monitoring and following each child that referred, and through the process, contacting PCPs, contacting audiologists and the hospitals regarding each of those individual children, and, um, again, you can see, there was a big jump in part C, and, um, our numbers improved also for follow‑up.
>> SPEAKER:  So, in 2014, we started Maine's Guide By Your Side program with Hands & Voices.  I'm sure most of you are familiar with that, and our program coordinator was heavily involved in that, it was her job to really implement that program and get it started.  We hired four parent guides, we trained them with the national trainers from Hands & Voices, all of this was HRSA funded, and that really started to make a difference in our state, adding that parent‑to‑parent support, parent engagement throughout our whole process, and we embedded this into Maine's early intervention system.  We felt strongly that parents needed parents early on in their process.  So, a lot of times, before, early on in our state, we had all these separate silos, so we worked together to make one system, so adding parents to the first six visits of the early intervention services really, really made a big impact in our state data‑wise.  And in 2017, we also started adding deaf and hard of hearing guides.  The deaf perspective was never really embedded into our process in Maine.  We had lots of deaf and hard of hearing adults, but they were out there, kind of doing their own thing.  We wanted to make sure that families also had deaf and hard of hearing adults exposed to them early on in their process, so we embedded deaf and hard of hearing adults into the early intervention process as well.  
So, parents have an opportunity to meet deaf and hard of hearing adults within the first six visits.  This was also funded by our state HRSA grant, and for those of you that are involved in HRSA know that you have family engagement as a high priority in HRSA, in this cycle, so if you're looking for ways to check that box, partner with your family‑based organization, and if it's not Hands & Voices, partner with them to see how can you embed this in their process to get your numbers up and to get families' needs met.  Um, embedding it into early intervention was a little bit of a process, as I'm sure you can imagine, but we worked really closely with part C and showed all the reasons why it's important for families to meet other parents and families to meet deaf and hard of hearing adults.  The deaf and hard of hearing adults were trained by national trainers from Hands & Voices, they were trained to go in neutral, balanced, unbiased, and support families just from their own perspective and talk about, okay, I'm a teacher, I'm an early interventionist, I'm a carpenter, a psychologist, I work in a store, what have you, and talk about their lives as deaf individuals, not about modality, but we made sure that we exposed parents to a lot of different adults, so they didn't see just ASL users or just LSL users, just cued speech users, and our events started incorporating a lot of deaf and hard of hearing adults as well.  We made sure every event had deaf and hard of hearing people there, so families have a natural interaction and opportunity to meet deaf and hard of hearing adults throughout their journey.
>> SPEAKER:  When a baby refers on a newborn hearing screening, this is what happens in Maine.
>> SPEAKER:  So now, in Maine, by one month of age, um, the screening facilities, when a baby referred and is being discharged, they're required by law to schedule an appointment, whether it's a, um, outpatient re‑screen or a diagnostic at an audiologist.  They complete, we have a fax refer form that they complete that has all the parent contact information on it, it has, um, the last hearing screen results, it has the PCP information, the primary care provider's information, and it has the appointment information, and then that form gets faxed to the program, the Maine Newborn Hearing Program, and it also gets faxed to the child's primary care provider, so they're aware of the results and aware of the follow‑up appointment and can follow up with the family.  So, by one month of age within the program, this is a baby that refers, um, the follow‑up coordinator will contact the screening facility, if there's any missing information on the facts, if we need more information, and the follow‑up coordinator contacts the child's primary care provider to make sure that they're aware of the appointment and to answer any questions they might have, and then the parent consultant, um, contacts the family for the same reason.
>> SPEAKER:  By 3 months of age, the follow‑up coordinator will contact the audiologist, if there's no report, to see if that baby has been there, if they've not gone yet, to make sure that they're getting there in that timely manner.  They contact the PCP, if there's been no follow‑up, so that they can also follow up with the families.  Um, the parent consultant contacts the families to see, um, if there's been follow‑up, if not, why there hasn't.  The parent and the follow‑up coordinator also, um, we communicate with each other, so we can make sure that we're both following these families and getting them into these appointments.  I also, the parent consultant contacts the families, if there's any hearing loss that's been confirmed.  Kind of at that point, that's where I will tell them about my role a little bit, why I'm in this position as a parent.  I share as much or as little of my story and my son's story as seems pertinent to that family.  Some families want a lot of information, some families are just kind of processing and are just happy to know that there's somebody there.  I, um, we collaborate with early intervention, so I make sure they know the process that's going to be happening, who's going to be contacting them to follow‑up, the different organizations, the Guide By Your Side program, I offer referrals, if that's something that they're interested in, and if it's not at that time, I let them know how they can get that referral, if it's something they want at a later time.
>> SPEAKER:  Then by 6 months of age, and in Maine, I'm happy to report this is really happening at more, like, 3 months of age, but by 6 months of age, the parent consultant is providing all this follow‑up support that we talked about, and she's starting to collaborate with early intervention, she's collaborating with my staff, so this loop‑around that we have, Anne's checking, I'm checking, she's checking, and we're all making sure we're not losing families, or trying not to.  The follow‑up coordinator is contacting all the doctors and the audiologist as needed, checking to make sure that baby and that family got from point A to point B, and we're all talking to make sure that this triangle and this loop is happening.  Um, we're also, by this age, doing pretty good at making sure families and children are enrolled in early intervention and there's a strong partnership with part C and the Maine Newborn Hearing Program, our EHDI program, and in my services, early childhood and family services, we have a memorandum of understanding in our state that has early interventionists connected with the Maine education center for Deaf and Hard of Hearing and part C, working collaboratively, going in together.  
In years past, we had all these silos, we had different agencies that, um, listening and spoken language or ASL or the School for the Deaf or what have you, now we've made one seamless point of entry and one seamless point of early intervention, so our services come in through part C, and then we have a partnership, and for those families that we see start to drift off the other way, we're calling Tonya, and she's calling them up, mom to mom, so that collaboration with early intervention and the parent‑to‑parent support from these two parents has been pretty amazing.  What we've learned is some things that works.  What works is parent involvement.  I don't think we can stress that enough.  Having these mothers involved that can speak from their own stories, their own frustrations, their own sorrows and their own successes has really made an impact on the data in our state.  Our clear data system has been really helpful.  Data talks, right?  So, if you have clear data, then you can use that with your funders, you can use it for family support, you can use it again and again, and our three‑pronged approach, um, the collaboration between the follow‑up coordinator, the program coordinator, and early intervention.  This is Maine's EHDI program, and the three entities that are always in communication and collaboration.
>> SPEAKER:  So, what we've learned, the challenges, um, lack of resources, I'm sure a lot of states have the same situation, financial and actually staff/personnel, lack of audiologists.  We're also a rural state, and things like that.  Actually getting the information from the screening facilities, getting the information from the audiologist and just making sure that we get information shared between all of us, and we don't lose anyone.  Training, it's hard to keep up with training.  Staff at hospitals, there's a high turnover rate, training within the audiology facilities, and also within the, um, primary care provider's office.  You know, a lot of these practices, they may never see a child, or they'll see one child, and, um, they're not familiar.  So, training is an issue, and consistency, that we're all following the same process, um, that we're all using the same standards, that all the professionals are following the standards, the appropriate testing, um, you know, the follow‑up they're doing, that they're doing the appropriate follow‑up.
>> SPEAKER:  So, how the Maine EHDI benefits from parent involvement, I think that's the theme of this whole conference, the parent‑to‑parent support and the follow‑up process is really big piece.  I had a mom recently, I was kind of telling her my story, her child was kind of along the same lines of my story, and so while I was sharing this, she got very emotional, and by the end of the call, she said this is the call I needed to have, you know, she'd just come back from the audiologist, and having that parent contact really early on was something that she had a, she felt a lot of value in.  Um, having parents in the early intervention process, same thing.  You're getting all this information, you have all this technical information, and just having the parent there that can talk to you, kind of the more human piece of having a baby that was just diagnosed.  Um, having parent voices with professionals, being able to come in and say, as a parent, this is what happened, this is what would have been better for me, this is what, you know, really worked for me, I think, um, brings that personalization, so that these professionals kind of have, um, more of an awareness of how they're delivering news to patients or how they're, um, going through these processes.  Um, having parent voices in the EHDI awareness programs, those screening facilities, early intervention staff programs, just, um, you know, again, just brings that piece in that, I think, makes it more of a human experience for everybody and, you know, you just really know a lot more about what these parents are going through, and it's improved data, there's, I think, a lot more engagement when you have parents involved and people that are a lot more, um, you know, educated on everything.
>> SPEAKER:  So, as you can see, kind of, we did, like, a little history from 2005 to 2016, and the data does say it all.  So, all the steps we've taken and how much our data has improved for the one‑three‑six for EHDI, and that's our contact information, if anybody has any questions later on, or if they have questions now, you can ask them. 
>> SPEAKER:  I am wondering how many babies do you guys get on an annual basis who refer that first time, and then how many do you have who are identified on an annual basis?
>> SPEAKER:  So, I actually was looking at 2016, um, data the other day, because I track these children outside of our database on an Excel spreadsheet, and, um, I looked back at 2016, and we had about 400 babies, um, that we ended up tracking throughout the year that had not passed their initial hearing screen.  We have 12,000 births annually, so, um, we had about 400 babies.  I would say, as far as diagnosis, I was just looking at the 2017 numbers, and, um, I want to say we had 21 diagnosed with hearing loss, so that doesn't sound like a whole lot, so, you know, our numbers are smaller.  We're a rural state, and we only have, like I said, 12,000 births.
>> SPEAKER:  The highest we've had in the past five, ten years has been, like, 30, 32, 33.  We're tiny.
>> SPEAKER:  Well, and when I say that, those are children, you know, that's 21 2017 babies that didn't pass.  We had other, older children, um, or other children that did pass that were diagnosed with hearing loss.
>> SPEAKER:  That's just the screening, right?  Just in our early intervention, in one month, this past month, we got 31 referrals.  So, they're coming from other ways, moving into the state or late‑identified or what have you.
>> SPEAKER:  Question?
>> SPEAKER:  Hi.  Um, so, I wanted to know if you could just touch a little bit more on, you said it's required by law for parents to schedule either the outpatient screening or a diagnostic, so I'm assuming that's from the hospital, do they need to do it at the hospital?  Or, like, what's that process?  And then, um, the second part, have you, how does a family determine if they need the outpatient screening or the diagnostic?
>> SPEAKER:  Well, um, it's the screening facility, so the hospitals, they, each facility has a different process as far as whether they have their children come back for an outpatient re‑screen, or if they have them go to an audiologist.  Um, so, but by law, that screening facility, it's written in the law that they're required to schedule either, you know, whether it's an outpatient re‑screen or a re‑screen at an audiologist or a diagnostic at an audiologist, um, so, if, typically, if it's regular working hours, you know, they're not discharged on the weekend, um, they will call the audiologist, schedule an appointment, um, put it on the form, let the family know, and fax the forms out.  If it's, um, an outpatient re‑screen, you know, they have their own process within the facility.  So, each of the hospitals have a different process for that, and since we are rural, actually, it has helped our numbers, I think, the hospitals that are doing the outpatient re‑screen, and they have them come back a week or two, like, if they have a well‑child check, they'll come back to the hospital for an outpatient re‑screen.
>> SPEAKER:  We're just, um, experimenting now.  We will be, we put an ABR that can travel, so to go to the rural aspects of Maine, early interventionists will be taking the machine to the far‑reaching corners of Maine, that are really hard to get to these screening facilities, doing the ABR there, connecting through tele‑audiology, to the audiologist that works for me in southern Maine.  We'll see if that helps our data little bit better on getting these babies to the next step.  All right, thank you all for coming.  Enjoy the rest of the conference.
(Applause.) 

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.