ROUGH EDITED COPY

EHDI 2019
TOPICAL SESSION 5 - INTERNATIONAL A
TEARING DOWN THE SILOS IN INDIANA:  HIGHLIGHTING INTER-AGENCY CONNECTIONS IN OUR EARLY INTERVENTION SYSTEM
MARCH 5, 2019
11:00 A.M. CST

CART PROVIDED BY:
ALTERNATIVE COMMUNICATION SERVICES, LLC
www.CaptionFamily.com

***
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.  
***
	>> I want to point out emergency exits in the corner.  Please enjoy your session.  
	>> Hopefully we don't need the emergency exits today but it's good to know where they are.  Welcome and thank you for coming and your interest and learning more about our early intervention system in Indiana I'm Bethany Colson I'm the Executive Director at the Center for Deaf and Hard of Hearing Education in Indiana and we're going to pass down and I'll let all of my colleagues co-presenters to introduce themselves.  
	>> CHRISTINA COMMONS:  Good morning I'm Christina Commons and I have the privilege of being our Part C coordinator early intervention director for Indiana.  
	>> CINDY LAWRENCE:  Hi I'm Cindy Lawrence and I'm the early intervention coordinator with the Center for Deaf and Hard of Hearing Education.  
	>> STACY ALLGEIER:  Hi I'm Stacy Allgeier I'm the coordinator for the EHDI Program in Indiana.  
	>> Last but not least I'm Mariana for the Guide By Your Side program in Indiana.  
	>> We'll start this morning by thinking about our organizations in relation to working with families.  And the idea that birth to 3 First Steps, our early intervention system, our center, Guide By Your Side and of course EHDI are all linked to families.  Getting information from them, giving information to them, providing services, resources.  And over time I have come to realize that we are not just unique entities but really pieces of a larger puzzle, particularly for families as they are engaging in this process and in their journey.  
	It wasn't lost on me yesterday that Dr. Swenson talked about the idea of having unique entity but also being sure that we understand ourselves as part of a larger body.  And certainly what we're going to talk about in our collaborations today.  
	But part of this idea of being pieces of the puzzle is we also have to be systematically aligned in order for that to make sense, in order for it to be effective so it's really what we're going to talk about in collaboration efforts as to how we have aligned ourselves around the family both in relation to data sharing, both with the family and with one another as well as services and integrating those along the family journey, birth to 3.  
	So we really want and have made efforts for it to look like this, that we are a cohesive picture here, again family at the center.  For those of you who are not from Indiana, of course it may be helpful for you to understand our journey or the family's journey from birth to 3 and how we are interacting with them loaning the route so I'll start there before I pass the mic to my colleagues and they share information about the relationships differently between our -- between our organizations and looking at the steps birth to 3 what the journey should look like optimally.  In Indiana first is that screening process typically happening that Newborn Hearing Screening right after birth and our EHDI Program is really the responsible party for that.  We're the one that's overseeing and gathering information.  
	I will say that it's one area of our state that we're doing quite well.  We're proud of this.  That for us the grand majority of babies born in Indiana are screened after birth so it's a sense of pride for us in this step.  We are also finding hospitals are assisting families when they are referred from that initial screening they are helping them to make that connection and perhaps even making that appointment before the family is leaving the hospital.  Again that connection to our next step, which is identification for those who are referring from screening, of course further diagnostic testing in order to see or identify a child as Deaf or Hard of Hearing.  
	Again, this also falls on the shoulders of EHDI Program in our state.  And this also is -- I want to just touch on the fact that the database is really key for EHDI.  And coming then and sharing that information when a child is identified as Deaf and Hard of Hearing to be able to refer out to the other organizations represented here as well as others in our state.  
	So it's really key, that database that we're going to talk and share about today.  
	So following identification, that next step again on the shoulders are the -- or responsibility of our EHDI Program is to refer for services and this is when you'll find all four of our organizations to get involved in the process and along the program.  So EHDI our state refers to our early intervention system for First Steps as well as Hands & Voices Guide By Your Side program and our center.  Our center we'll talk more but from identification to school exit is responsible for monitoring and tracking we also give specialized services for children who are Deaf and Hard of Hearing in our state so that's our connection here in this step.  
	From that referral the typical thing that happens is the Parent to Parent support for Guide By Your Side is making that connection to families very quickly and often while the referral is churning and starting along the process for First Steps and for our center, that Parent Guide is going to make a connection to that family.  For that Parent to Parent support piece.  
	Then early intervention would be initiated, again, through our First Steps program.  And connection to our center, again, as an agency specifically offering services for Deaf and Hard of Hearing children according to their needs.  
	So if all goes well these are the states we anticipate should happen and should happen quickly when a child is born in Indiana.  But we are certainly familiar with the idea of Loss to Follow-up so want to connect on that just briefly before I again pass the mic.  
	The first idea within EHDI Loss to Follow-up within that child being screened and referred on the screening and perhaps not coming back for further testing for identification as Deaf or Hard of Hearing.  We recognize that certainly.  And another area of Loss to Follow-up and what we're focused more on in our collaborative efforts have been focused more on is in relation to that referral for services.  
	So once we know a child is identified as Deaf or Hard of Hearing in Indiana then making that connection to early intervention.  We are finding that some families then don't get connected to services, particularly specialized services.  So that's the area that we have really come together to determine how best we can ensure that we don't have Loss to Follow-up in that juncture I'm going to pass to Stacy Allgeier she is the EHDI coordinator for our program.
	>> STACY ALLGEIER:  Our Indiana EHDI Program lies within the Department of Health, specifically under Maternal and Child Health division.  
	This is because we are connected to the universal newborn hearing screen.  And our hospitals report directly into our database.  
	Another unique factor about our Indiana EHDI is five of our six onsite employees are parents of Deaf and Hard of Hearing children and all five of those started out as Parent Guides before they moved into EHDI system.  
	
	Okay.  I'm sorry.  Sorry about that.  
	We do have the ununique requirement of the HRSA to provide Parent to Parent support so we do have a collaboration with Hands & Voices.  We provide all families with a Parent Guide for that first year after identification.  And Mariana is now going to explain further about our Guide By Your Side program.  
	>> Hi, thank you.  
	As part of the JCIH packet, Goal No. 9 and I'm sorry I'm going to read it because I couldn't remember this part by memory, all families would have access to other families who have children who are Deaf or Hard of Hearing and who are appropriately trained to provide culturally and linguistically sensitive support, mentorship and guidance.  And the link should appear on the screen any minute now.  
	So this is when the Guide By Your Side team comes in our mission aligns very well with EHDI and the mindset of what is right for -- what works for your child is what makes the choice right.  
	EHDI Program refers children to us within 48 hours.  Our job is to call the families and offer support.  
	So that every single identified child -- I'm sorry; my English is rusty -- gets the opportunity to access Parent to Parent support.  Some parents decline and that's all right.  We just want to make sure we offer that support and it's for them to take it or not.  
	All parents guides are trained we have to be HIPAA compliant, FERPA compliant we have two yearly trainings to make sure we're up to date and we work under the guidelines that cover state -- let me see.  You just saw the timeline showing the direct referral to EHDI to Indiana Hands & Voices.  And the Guide By Your Side program.  And you may wonder how we are able to do that.  Once the EHDI gets the referral  is the one in charge to make all of the referrals internally one of them to be First Steps, sending a toolkit and to the Guide By Your Side program so it's sent at the same time so it's a very smooth transition from the EHDI Program to the Guide By Your Side program.  
	Once we get those referrals, we have someone that tries to match parents to a guide that we would be a good mentor to them, if they are -- if there's additional medical challenges to the child at -- in the child at birth.  If the family uses ASL as their main mode of communication we match them with a Parent Guide with those skills to provide meaningful support to that family.  
	Oral tool for the EHDI Family Connect called a parents guide to Deaf and Hard of Hearing early intervention.  The link is there on the screen.  And you know, anyone is welcome to access that if you have interest to read the whole thing but these are the guidelines we use to train and provide support for the Parent Guide in Indiana.
	>> Another collaboration that's working for Indiana EHDI is to work with the Center and cover -- this is our -- to cover that is our EI specialist Cindy.
	>> CINDY LAWRENCE:  So the next -- click it for us all right.  Yeah, okay.  
	So in Indiana the center for Deaf and Hard of Hearing education was established in 2012 and that was following legislation that was actually initiated by our Governor's Office after they had done a study and they recognized the fact that we had all of these entities that were separate, under separate agencies, separate systems.  And because of that, we weren't able to effectively track Deaf and Hard of Hearing children.  When they get to school-age, nobody knew exactly how they were doing.  We knew about how many kids there were but we didn't know how they were doing.  
	So that was the original intent of establishing the center.  And they took the previous outreach services staff who were providing early intervention and school-age assessment services.  And they took the EHDI Program folks and put us altogether under one roof.  So we are actually housed at the Indiana School for the Deaf.  So they are another partner.  Not necessarily part of this EHDI picture that we're sharing today.  But they are a partner.  Obviously they are our landlord.  
	But us being in the same building has been a very helpful collaboration.  We get to share the same copy machine and all kinds of things get to happen when you share the same copy machine.  
	So we are sister programs under the health department.  
	And our center provides early intervention services through an early intervention network that I'll talk more about at a later slide.  
	We provide services basically for -- assessment services for children transitioning and we provide assessment services for school-age and Deaf Education program services.  
	And then consultation with our Department of Education.  
	As well as all of the other state agencies.  
(Chuckles).
	>> CINDY LAWRENCE:  That we work with.  And so basically we're responsible for children from birth to school exit.  And with that, then I will pass it along back to.  
	>> STACY ALLGEIER:  Okay.  With the creation of the center, we realized that an MOU was needed for data sharing to take place.  The reason that we are separate entities is that EHDI is HIPAA compliant.  And the center is FERPA compliant.  So an MOU had to be put into place.  And part of our MOU includes families signing a consent and release form.  And they have multiple opportunities to sign this form.  It's available from EHDI.  Available at the Center.  Parent Guides can provide this form, as well.  
	And this form will cover both EHDI and the Center.  
	This MOU allows us to make the Center aware of our identified babies.  And as Cindy said, location is on my side here.  When I receive a newly identified child, I simply walk down two offices, I fax the information to First Steps, I hand that information off to Center personnel and I alert Guide By Your Side.  Again, we're housed within just a few offices all connected.  
	And you'll see that there are safeguards in place in our database systems here in just a second to decrease our Loss to Follow-up with these EI services.  
	>> CHRISTINA COMMONS:  As I said before my name is Christina Commons and I am the director of our First Steps program.  As they mentioned before, we serve all children under the age of three through their third birthday for early intervention through our Division of Disability and Rehabilitative Services.  
	It's important to note that all children who are identified as Deaf and Hard of Hearing are eligible for our early intervention program.  And that in state Fiscal Year '18, First Steps served about 26,000 children through evaluation and ongoing services.  And we wrote about 22,000 IFSPs.  We currently have somewhere between 600 and 700 children who are identified receiving early intervention services in the -- and the Center for Deaf and Hard of Hearing Education serves about 2 to 300 of those children.  
	First Steps did recognize that early intervention hearing services are specialty services.  And not just add-on services for children and families.  And assisted in that establishment of CDHHE as a provider agency we moved from having independent providers to having provider agencies in 2010 and felt it really important for our families to be connected with those specialty services.  
	The personnel and professionals working for CDHHE have specialized core knowledge and skills to partner with families and promote their child's development so that partnership is extraordinarily crucial for them.  
	>> So as Christina said, the partnership she sees the importance of partnering with us because of the specialty core knowledge that our early intervention providers have.  And that in turn we see it's extremely important to be part of the First Steps system.  
	So I think that's probably one of the most important key factors that allowed that collaboration to happen is being part of that system instead of kind of waiting for the system to recognize us.  So it's been a mutual beneficial partnership I think.  
	And in light of that, we then in turn go out and we do presentations with the Indiana system points of entry.  There are nine of them in the state.  And we provide education about what's unique about our population.  
	We provide them with a list of the services that we offer that are different than the other agencies in the state.  Other agencies provide PT, OT, speech and developmental therapy.  
	We provide audiology services, speech services, visual language services and parent advising services.  
	And part of our education is to help the system point of entry staff personnel understand that by working with the families and identifying what the family outcomes are, we'll match services that will help them meet those outcomes.  
	So we are constantly educating people around the state with -- that's kind of our unique niche within the Center.  
	As she said, we have this core knowledge and expertise.  And that is in line with the JCIH Position Statement.  Goal No. 3.  So we're trying to enhance the overall EHDI system in that way.  
	We also provide -- just like every other First Steps agency, we provide ongoing quarterly trainings with our staff.  We read all of the First Steps newsletters diligently.  
(Chuckles).
	>> And we participate in providing information, which we'll do an article soon.  So yeah, we take our responsibility in being a First Steps agency very much -- we're honored that that's recognized.  But we also want to give back to the system.  
	>> Okay.  In just a second you're going to see a video that features Christo, our software developer for the Department of Health.  And also from Dr. Suzanne Foley who is our EHDI director in Indiana.  We are so lucky in Indiana that the Department of Health offers Christo to be on location with us two days a week in our office.  He's sitting in our office with us.  And he develops our software.  So any time we see a glitch, it's just, hey, Christo, I'm having trouble right here, how can you fix this system?  And it works out amazing.  
	You'll also hear from Billy who is the center's database developer.  Again location he's onsite with us every day and it just helps so much.  
	These players have made sharing of data possible and easily accessed.  And the result being a decrease in our Loss to Follow-up children.  
	>> I would like to introduce Christo Andrews our software developer for our EARS database system that we use with health departments.
	>> Hi I'm Christo and I'm the I.T. guy that, who with EHDI and maintains the EARS system.  Now EARS is a Web site that we use to collect data to monitor the kids and for follow-up.  
	We have the data coming in from manual entry, which is from the audiologists who enter the kids as they are diagnosed and from the hospital reporters who enter the information about the kids who didn't pass or failed the screening on a monthly basis.  
	Now, we also have data coming in on a daily basis from -- and that's automatic from the -- from the records of birth and records of death and also from other reports.  This information comes to us within two days of a kid being born.  
	And that is fast enough for us to start monitoring a kid.  
	We also -- I also spend like two days a week working with the EHDI staff to identify issues that they may have or find where there's ways we can enhance the system.  
	>> Okay.  I would like to show you quickly how our ears database works this is my alert page.  This is showing me all of the alerts that are coming in right now I'm going to work with Elmer Fudd he had a temporary conductive diagnosed appointment, Elmer Fudd and I got an alert that that has lapsed that he needed to return and we haven't received any new information.  
	So I can take a look at his day form from that appointment, and I can see that he had this kind of evaluation and that these were the results.  He was supposed to return in six months.  And that has yet to happen.  And I could now reach out to the audiologist or reach out to the family to see how things proceeded.  If I were the audiologist and wanted to put in the next appointment, I can see did not pass his newborn hearing screen.  The PCP is already pregenerated.  
	Now I would enter the results of the testing.  
	I can make recommendations.  For example I'm going to refer him to First Steps.  Continuing monitoring.  And sending the information to the PCP and the family.  
	So now that the audiologist had entered that information, if you go back to my alerts, you will see that I now have an alert to send a toolkit to Elmer Fudd and a toolkit is information we send to the parents and the PCP of Elmer Fudd.  
	In our -- and our database is set up that we can send that information from the database.  So this is the toolkit.  I click on letters.  And have letters generated.  I would click on diagnosed school-age because Elmer is older.  I would click this to send a toolkit to the PCP and this to send a toolkit to the parent.  
	And if the family was Spanish speaking, I can click this for Spanish speaking toolkit.  
	Then I make an alert to myself or I can also make an alert to anyone in my department.  And once I click save, those letters are created and sent out.  
	All right.  Now I would like to introduce our EHDI Program director, Dr. Suzanne Foley and will explain how she uses the reports created by EARS.
	>> So part of our data cleanup in trying to look to our Loss to Follow-up babies involves many different processes.  And one of them includes Christo developing some reports for us that can look at where our data system is missing pieces.  For example, the enrollment to First Steps.  
	So our EARS system, we're going to show you one of the sections.  Our EARS system has reports that we can pull up.  
	So part of our system includes reports that Christo has developed such as this one, which is the CDC reporting.  And these reports he made that directly correlate with the survey that we have to turn in for our CDC data annually.  
	Other reports he has developed based on our need for improvements in our system, including our quality assurance efforts so right here under data cleanup, we can go to EI enrolled unknowns and we get to this screen where we can run a report based on the year of all of those babies that we do not have early intervention data on.  
	So either an IFSP date or an enrollment status into EI.  
	And then the report that we can run comes out into Excel.  So we've taken out the names.  But you can pull it up by name.  And we have this ID, which is called our PID which allows us to look into EARS.  So these are all of the children that we don't have early intervention enrollment status on.  And so we can take this report and go to the Center, which they will explain to you soon with their Paris reporting system and look up these babies by the PID and see if the Center has information on enrollment.  We can also go to our Guide By Your Side parents and program and ask if they have a relationship with the families.  We can ask for that information on the enrollment into early intervention.  
	So again, with these relationships, we can then use this data to look at different database systems and with our programs to get full datasets on our babies.  
	>> Okay.  Before we move to our next video showing how the database with the Center works, do we have any questions?  We have a moment for questions.  Any questions on how our EARS database works?  Yes.  
	>> (Off microphone).
	>> I can repeat.  She asked, what was our budget for having such a system created.  And I have only been at this job for about 11 months.  So does anyone -- I don't have that information.  I know that we had a grant for that at one point.  And it has been a long process:  In fact we didn't have Christo onsite until recently.  And we've had a lot of our audiologists and our reporters from the hospitals kind of bail on the database because when it first came out it was very hard.  So then they went back to faxing the information.  And then that just means I take the fax and I have to enter it.  And you saw my alerts.  So now that we have made these improvements we are trying to reach back out and let people know that our database has improved and should run more smoothly.  Especially when I get a question from a reporter or from an audiologist, again, I have Christo right there.  And how wonderful to say I have EI right next to me or I.T. next to me and that they can help through that.  
	Any other questions?  
	>> Hello, everyone, how is Chicago?  I'm Billy Schwall and I hope you guys are all having an amazing time so far.  I'm with the Center.  And our responsibility is compliance and outcomes.  I work with different program areas, staff, early intervention audiology, assessments and Deaf Education.  
	I'm responsible for developing and refining data management systems for the purpose of monitoring and tracking.  
	I want to give you a brief history of how we started.  And how we have evolved from Day 1.  
	The Center was founded in 2013 so there's so many different types of spreadsheets all over and you know, I started thinking about it.  And I'm not against them.  I love spreadsheets.  I use them every day.  I think they are amazing tools.  And I'm sure you all feel the same way, as well.  Really it's easy feeding data, putting it in, all of the different spreadsheets.  Task files.  Using the tables, the number calculations.  Utilizing all of these amazing filters that we have.  Different bar graphs, charts, pivot tables, everything.  
	So there's just many different things that you can do with a spreadsheet.  And it's a very powerful tool.  
	But the problem is after all of this work at collecting all of this data and it keeps growing and growing and growing trying to figure out what we can do to manipulate it and manage all of that so going back and trying to maintain all of that.  It truly is a headache.  
	But I thought there was an opportunity to just go ahead and do a build one centralized database system relational.  So there's many different tables.  Primary keys.  Table lengths.  Using data normalization.  
	Structure -- mechanical sure the structures are ready to go.  Improving performance.  It's a more powerful system.  Very flexible.  Its scalability data manipulating pulling reports, automation, it's just a very -- it's very powerful.  It truly is, this tool.  The Center staff has been using it very helpful.  
	This -- very heavily this app developed is called Paris and it was developed for the Center so I'm going to show the Paris app and how we use it.  
	It pulls a name for example we're going to use Bugs Bunny so I type in that name.  There were no results.  So I went ahead and typed again.  And it called onto pull out the reports from the different pages.  And really it was designed for the program area.  
	But right now we're going to focus on the whole page as a whole and early intervention.  I'll show you.  
	>> On the child global page there are fundamental information about the child that includes the following, the date of birth, parents name, contact information, home language, child's language.  It also has the child's personal ID number from the diagnostic audiology evaluation form.  
	>> The EI page is awesome.  There's so much information included.  Was the child enrolled at the early intervention service they are getting.  The EI, there's so many different services you can provide and documentation.  Home visits.  And that's calculated here by the Center and IFSP.  It's there, as well.  And we follow that.  And if the family denies and does not want service, then we can document that, as well.  
	>> This is the page where we have key dates that helps with the EHDI reporting.  We have dates of birth, date of evaluation, date referred to First Steps, First Steps referral date, First Steps intake date.  And the first IFSP date.  
	After the Center's personnel enters the child's information, usually when we receive the day form, we would complete or update the child's global page, with as much information as possible.  If the child is under the age of three and we do not have any known EI services, the personnel will create an email to the First Steps coordinator.  The email will include a PDF file attachment that looks like this.  
	It has the basic information necessary for the Service Coordinator to initiate a referral process.  
	>> Now we're going to talk about our app that was developed for the EHDI.  
	It's the same as Paris with the app, with the exception we have eliminated some of the pieces because we have the Memorandum of Understanding.  And specific data points that we can share.  So we're building the app as like a light version of what we have for Paris.  
	>> In this app there are some ad hoc reports we use to help ensure the Center and EHDI track and monitor the child's progress from the time the child has been identified to the time the child exits the EI program.  
	This report lists the children under 36 months who are in the Center system but do not have the PID or the date of evaluation that normally is found in the EHDI's EARS system.  
	This report lists the children with a PID number, the personal ID number.  But there is no known date of evaluation.  Like the previous report this information can be found in EHDI's EARS system.  
	This is our most used report that lists children who have been referred to First Steps but no follow-through since 40 days.  It will flag those who are approaching the 40 days mark so that a plan of action is in place.  
	Usually a follow-up with the First Steps coordinator or a guide will contact the family for updates.  
	>> There's a lot more to it with the 40 days, after the 40 days, and there's another report very similar past that 40-day point and up.  Those two, very important as far as to follow those reports and make sure the children are not falling into the cracks or left behind.  I'll let my colleagues elaborate on that more.  
	>> Okay.  While we're switching back, I just want to follow up with what Billy was explaining about the apps and how we use that.  Again we're tracking these children so if they don't get to First Steps so the 40 days as an alert they are showing up on that app we are following up before that.  And the 40 days was randomly picked a little bit before the 45-day Federal timeline so we're really following up earlier than that.  
	And again that app also has a tab from the day we refer, it's tracking whether or not they get into First Steps so basically if the name is on that app, we're following up with those kids.  And that's just been an enormously valuable tool.  To me it's one of the turning points in allowing us to track children and also to make system changes and I think that's what's most exciting about what we have been able to do with our work is change the system so that we can make sure those children get to where they need to be.  
	So I work with the Guide By Your Side Program Director and guides when we have a child that isn't getting into First Steps, we know why they aren't because Service Coordinators will say I couldn't get ahold of the family or the family has declined services or maybe the family is with another agency, they have already got other issues going on with the family.  So through that tracking of knowing why they don't get to First Steps, we kind of split up our course of action if it's an issue where maybe the Service Coordinator needs some reeducation about eligibility or the purpose of our specialized network, then that would be something that my staff and I will work on.  If it's an issue where the family needs support then Mariana and the guide program will follow up with the families.  
	>> Sometimes when someone reaches out to us and has a concern of a specific child or a few families who are approaching that 40 day mark or past the 40 day mark we can always contact the families.  Sometimes it's education on what First Steps is, what early intervention can do for you.  
	Minority communities could have some fear about the system or you know lack of understanding about the timelines or cultural opinions that are different from those of people from the U.S.  So we can take that role and try to educate, try to support.  Sometimes if needed even be at some of the First Steps visits, intake, things like that just to make sure the family feels fully supported.  We think the better they feel about that intake meeting and the few visits after that that the program will buy into the program better we'll have more commitment towards the program and I think we see better he results in the longer term of them following up with the systems and following up with the supports and not having a discharge in three months or you know termination of services.  
	So we can support them that side of the family.
	>> Did anybody have any questions about the Paris system before we go on?  
	The question is what database did we use?  It's an Access database.  Yeah.  
	>> So as I explained, a lot of families have misconceptions of what early intervention is and what we do.  
	And through our work together over the last nine years, we're always looking for ways in which we can improve, collaborate, our work with families to streamline the information that they are receiving.  
	And to really educate them the importance of early detection in their child's development when identified as Deaf and Hard of Hearing.  
	So in early 2018 we kind of sat down and were looking at the number of children who seemed to be falling through the cracks, through their database.  And understanding that data a little bit more.  And we started having conversations about the when, how and who regarding information provided to families in their early intervention journey.  
	And so through those conversations we landed on piloting a project in two of our nine regions we chose one in our rural area of Indiana as well as an urban area of Indiana.  
	And we decided that it was important to do that to gather information during this process because what might work in an urban setting might not in a rural.  
	And so for children who have been identified as Deaf and hard of hearing at referral, the Center for Deaf and Hard of Hearing Education will be attending the family's intake visit with their Service Coordinator.  And this will ensure that families will be provided the best information at the earliest time in their early intervention process about their detection.  And we want to be sure that families understand their child's hearing status.  
	The assessment teams that work for us are not the experts in that.  So we needed to have an expert at the table with us.  And we feel like this partnership will put us on the right trajectory for that.  And it's our hope that this process will improve that engagement of families, will retain them in the early intervention system and ultimately put them on that upward trajectory for when they enter school.  
	>> So hopefully at this point in the talk you perhaps are thinking about where you're from, whether it be your state or organization or what and perhaps other ways that you can take back or consider different collaborations, different MOUs perhaps, or data sharing that would be beneficial to where you've come from and where you work.  But we certainly are not finished.  By no means have we created the perfect system.  And we recognize that.  And so we'll talk about a few future ideas as we continue to move forward together in collaboration.  
	The first is related to WIC, Women, Infants & Children program in our state.  They are also another program within the State Department of Health.  And often have up-to-date contact information for families.  In a way that perhaps EHDI doesn't have as up-to-date contact information.  So perhaps collaboration with them would allow us to ensure we can continue contacting that family where they may live or however would be best at the time.  So it's something that's in the works.  
	Another opportunity that we are seeking specifically with our Center services is related to teleintervention so since we are a specialized network of providers looking statewide and recognizing there's a lot of drive time I certainly want to look to one of our early intervention specialists in the room right now.  And just considering how best we can serve perhaps with a hybrid model of sometimes being in that home and in-person with a family and sometimes engaging in more teleintervention so it's another opportunity that we're currently seeking.  
	Something that I think is ongoing as I look to this bullet point and look to Cindy as she seeks out opportunity for early intervention providers and to expand that network, we always are looking to those who may be -- have some background with children who are Deaf and Hard of Hearing but not as much in early intervention.  Or perhaps early interventionists who have some knowledge of Deaf and Hard of Hearing families and children and support but how can we engage them to give them the training to be a specialized provider.  
	So again just unique opportunities or looking at each professional individually to see what they can bring to the table and what training would help them most to go out and provide service and support to families.  
	Another thing that Guide By Your Side is currently looking at as Mariana spoke to before it's really a year there's a Family Connect that there's a year of time that a Parent Guide is engaged with a family.  So if that happens soon after that identification, that by a year, year and a half of age perhaps that Parent Guide is backing out and not as involved with families so they are looking at how perhaps they can engage through the third birthday for those families who could continue to engage in that support and find that to be beneficial for them.  
	We're also looking at the way we're monitoring language.  I know we're not unique in that.  We as Deaf and Hard of Hearing specialists continuously monitor language.  It's part of what their expectation is to do.  And we have quarterly reports through the First Steps system and it's expected that they will include that monitoring information and updating of language and communication development in each of those quarterly reports.  
	But doing that systematically or using necessarily the same tools is not in place at this time so it's something that we considered how to streamline or more systematically monitor language with our early intervention specialists.  
	Another one of the goals for EHDI this year is looking at that physician toolkit and physician training.  So ensuring that we are optimally educating physicians or giving them the tools that are most helpful to them as they interact with their patients and parents of children who are Deaf and Hard of Hearing.  
	So that is us in a nutshell.  I will say.  And we are excited to share with you how we found successful collaboration in the midst of going from silos really to a group of organizations, again, where we see ourselves as that one body, as how can we best be serving these families as a group and not individually.  So again hopefully some information that you can take back in consideration for where you're from.  We do have contact information here on the last slide.  We'd be happy to engage in further conversation.  And I think we do have time for questions.  
	So I'm sure there will be individual questions we would be happy to take those at this time.  
	>> I have a comment and also a question.  So as an audiologist who works in the state of Indiana, I just want to say that you know this presentation didn't do justice to actually the work that all of these ladies and others are doing.  
	I think I'm just so happy to be in Indiana.  Because we are able to work with First Steps, with the EHDI Program and with the CDHHE and know that they are so dogged and determined to follow these families.  
	I have families who say I got a letter from the state and that's why I'm here.  And they just -- they just help so much with following the families and then Mariana with the Spanish speaking families that we work with.  
	So I just want to give a huge shoutout to how well you all work together to give the families in Indiana what they need hopefully.  
	(Applause).
	>> My question is you said you piloted something in 2018 with the CDHHE D/HH specialists being there at early intake.  Do you have any outcomes from that?  
	>> So I mentioned that we started having conversations in '18.  If any of you have done work in State Government, things take a very long time.  
	So we I think have started at the beginning -- we also had a number of changes within our early intervention system.  And for our systems point of entry who were going to be piloting that, many of them were changing the structure in which they were doing those intake appointments and they were not ready to start the pilot until January of this year.  
	So while lots of conversations happened about what that will look like, we trained individuals in our assessment tool.  We had different iterations of what it might -- what might happen over time.  
	Would we write interim IFSPs how would we get services to families sooner so they don't -- one, so they can start getting support right out the gate.  And two, that we get them as much information and support them as closely as possible during that extremely long 45-day timeline.  
	I mentioned that we do serve about 26,000 children in early intervention.  And so we have -- we just -- to get an assessment done just takes a very long time.  
	But as I mentioned, these children, if they have been identified, they are eligible.  
	So we're trying to bypass some of that bureaucracy and get things in there at an earlier time.  
	So hopefully this time next year we'll actually have data to share and how many families have been taken out of that follow-up list.  
	We hope to shorten it.  At least that's the goal.  And then hopefully we'll also be able to expanded it to the full nine offices, as well.  Based I guess on their capacity.  
	>> Maybe that will be next year's presentation, right?  
(Chuckles).
	>> (Off microphone).
	I have a question about the toolkit that you send to the PCP and to the parent.  Who does that?  And is it sent over the computer or is it something that they get in the mail?  Especially the parent I'm talking about.
	>> Yes, I can help out.  Yeah, sorry.  
	It is something that does go in the mail.  When I click that toolkit, we have someone who gets an alert.  She pulls that toolkit together.  And sends it out for me.  So it's so convenient.  
	And another thing I was going to touch on is that we are very close to finishing our MOU with WIC.  And I think that that is going to make that Loss to Follow-up just plummet.  Because they have the information.  And so the reason we're not getting families is because unable to contact or unresponsive.  Once we get the right information on them, we don't stop.  
(Chuckles).
	>> So you mentioned that you used to fax all of your information to everybody, making sure hopefully it will get to the next steps and now you are all working collaboratively and can actually communicate with each other which has increased your reliability in your follow-ups.  Have you noticed that now that once you have gotten rid of the faxing it's all entered into your system that each one of your follow-up -- have you been able to track the difference in that from the faxing versus actually being electronic?  
	>> Okay.  Yeah, that works.  
	We haven't tracked that specifically.  We are tracking that our Loss to Follow-up is going down.  One thing we are tracking right now, which is kind of ironic is we send letters for a day follow-up lapse meaning that the child went once but didn't return to audiology again.  And what I'm doing now instead of just sending the letter out about that, I'm faxing the PCP on that baby and tracking how -- and I took 30 babies who had that.  I faxed the PCP a letter that they have an appointment lapse.  And I sent 30 letters to a PCP that they had a 30-day lapse and I'm tracking how many days until I get a response.  And I think most PCP offices address fax faster than letters.  So we might kind of go back to the faxing back and forth with the PCPs because they are not using our database system.  
	>> Sorry, she was behind you.
	>> Fabulous work that you've done in Indiana.  As you know I've tracked it for quite a while so I'm very, very proud to hear what you have done.  So in your future discussions since you have this great database set up and working are you going to believe able to track actual child outcomes and they are in the intervention system?  
	>> That's our goal.  Yes.  We have really good providers.  Like we said we are including the information in the child record so it's a matter of tweaking that actual database and identifying what fields we're going to put in there so that we can create reports on the outcomes.  
	So not -- we are gathering the individual child outcomes, in the -- and the next level of our development is to identify those fields so we can pull reports and then see how collectively the children are doing.  But we're not there yet.  But that's what's so awesome about having our wonderful database person who is -- he is Deaf himself.  He's a parent of Deaf children.  He's a data nerd and wonderful to work with and fun, too.  
	So it's going to happen, yeah, we're very lucky.
	>> I just wanted to add that our early intervention system is also looking at -- early intervention system is looking to enhance our database as well so what information is collected in the current database is very minimal, we have basic child information, who their head of household is, who is providing the services.  But it doesn't capture that information regarding that outcome attainment and improvements.  So we're hoping with the modernization of that technology, we'll be able to capture more of that outcome data.  And through our collaboration with the center be able to share that.  And I think we're also looking at improving our collaboration and work with the Department of Education.  So we're all in separate agencies within Indiana.  So having to coordinate data is oftentimes very tricky.  So we're hoping we'll be able to leverage that and then continue that through Part B services, as well.  
	>> From the Parent Guide perspective we just rolled out new training this year that we're starting to implement where part of our Parent Guide responsibility would be to teach the parents to track progress in their child in reaching these milestones and one of the things we're going to try to measure is the ability of the parents to know the rights, know the responsibilities, within the early intervention system and to speak up, you know, and request and make sure that they are requiring these follow-up and knowing is my child on target from the parent perspective.  So that's something we just had the training in January and we're going to start implementing it this year as part of the Parent Guide support would be to train the parents on these same topics from the parents perspective.  
	>> Hi I'm from Washington State and we have a similar center.  But different of course.  
	I applaud you for overcoming many of the boundaries that we are still working on ourselves.  One of my questions was answered.  It sounds like you're working on a tracking system and connecting Part C and Part B.  
	I'm also wondering as far as statewide services, do you have satellite office?  Because you reference to one of your EI specialists over here that time and everything we've been using some telehome visits and stuff, but I'm wondering, do you have providers regionally or locally or what does that look like?  
	>> So I'll take this one.  
	In relation to your first question about data specifically for Deaf and Hard of Hearing children we are engaging and Billy our database manager specifically and perhaps an online system, it's something we have dreamed of for years.  But even then having people to be able to put information into that system themselves, whether it be a teacher for the Deaf or a school system in some way we do have an MOU with DOE in addition with our MOU with FSSA and First Steps that allows for some data sharing but it's certainly a challenge and not one that has certainly run as smoothly as this collaboration to date not for lack of trying on both ends.  
	Secondary with relation to the regional offices or satellite offices, yes, we currently have two satellite offices set up.  One in northeast.  And one in southeast Indiana.  Our continuous challenge with that is personnel.  Hiring and keeping personnel in smaller areas of a state and perhaps more rural areas but asking them to have the expertise to be that educational consultant in that region for all things Deaf and Hard of Hearing, birth to 21.  So it's that push and pull a little bit between using someone who, again, to point out Meg as an example.  But someone who lives centrally but has such great knowledge and being able to -- you know it's a balance of do you have someone who we know has the expertise to travel.  Or do you engage in someone who has perhaps less experience or expertise but it's in that rural area.  So we continue to balance that.  
	We do have providers all over the state that are contract providers.  So not necessarily full-time staff but contract providers.  We do trainings as Cindy was mentioning the quarterly trainings as an agency.  As well as then training related to parent advising specifically.  In order to have those people throughout as well they are not full-time staff but available for contract services I think our time has ended thank you very much again our contact information is here.  Thanks.  
	(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.  
***