REALTIME FILE

EARLY HEARING DETECTION & INTERVENTION (EHDI)
"Together We Can Do So Much: Building Strong Partnerships 
To Enhance The EHDI System, Providing 
Better Outcomes For Children Birth To Three"
Room:  Vienna
Monday, March 4, 2019
2:15 ‑ 2:40 p.m. CT

REMOTE CART CAPTIONING PROVIDED BY:
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Communication Access Realtime Translation (CART) is provided in order to facilitate communication accessibility.  CART Captioning and this realtime file may not be a totally verbatim record of the proceedings.

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>> Hello, everyone, my name is Allison, I am your room monitor today and I want to make sure that you fill out your evaluations after we're done with the presentation.  Please stay for just a second after they're done and fill those out; they're in the corner of the room, we appreciate your feedback.
Together we can do so much.  We would like to welcome you.  Please enjoy the presentation.  
>> Hello, my name is Amanda and I'm from Hands & Voices from Oregon and I am the coordinator.
>> And I am Heather and I am from Oregon and I am the Oregon EHDI coordinator.  
>> We thought it would be really fun ‑‑ sorry, I didn't get her name on there.  Wait.... we decided later in the game to do it together.
But we thought it would be really fun to talk about how much we can do together and the unique collaboration that we're experiencing with the Hands & Voices the Guide By Your Side program working so closely together with the EHDI program.
I thought I'd start with a quote from Helen Keller, who better:  Alone we can do so little, but together we can do so much.
Not only did Helen Keller have a tremendous impact in the deaf and hard‑of‑hearing community but she actually helped start the ACLU and through all of the different collaborations she worked with, her efforts were far reaching and supported many, many people beyond just this one community.
>> So during our time together, we're going to tell you a little bit about some defining features that make the Oregon EHDI and Guide By Your Side collaboration special.
We're going to describe ways that both of our programs and the families that we serve benefit.
And summarize or give you some ideas about things to think about as you're looking at your own parent, serving parent‑based organization in the EHDI collaboration.
And just real quick before moving on, who's in the EHDI program?  Raise your hand.  That's a lot of folks.
Who's with a parent‑based organization?  A lot of other folks.  Nice!
And then who else is here today?  Just a few folks, if you can share?  
>> Just deaf people, services for deaf people.  
[Pause]. 
>> Okay, great.  Thank you so much.  
>> I just want to give a little brief moment.  Go ahead.  To acknowledge that this topic is a hot topic at this conference and that we care for the space that has brought, and so when we share, we're just sharing out of what we've experienced, but also as an opportunity, if it might be something that you want to adopt for the future with the next coming year with the HRSA grant working with FBOs and all that has entailed in the last few years so far.  
>> All right.  So we have, for some reason our slides did not get updated, so thank you for your patience as we quickly add all of the pieces in.
So, in some ways, EHDI programs and parent‑based organizations couldn't be more different, right?
So in Oregon, the EHDI program is in the Oregon Health Authority, we're a public health program, we're grounded in the discipline of public health, we do public healthy things, we do surveillance and evaluation and policy development, all of these pieces.
We are also showing up with our key cards to badge into our gray cubicle work spaces everyday.
We are a little bit risk averse by nature, you know, we're stewards of public funds, right, we work to advance the health and well being of the populations that we serve.
And so we enter cautiously into some relationships, whereas our counterparts here ‑‑ 
>> [Laughs].  Just hug everybody!  And don't really think about the safety guards that come into play sometimes.
So, although we have learned and we follow suit.  So as a non‑profit organization with Hands & Voices, our Guide By Your Side operates this way, we're a family‑based organization run by a board of volunteers, versus a public health department.  We educate parents and care takers.  Our goal is to support the kids by educating the parents.  We offer unbiased informational and emotional support.  We have a huge emphasis on personal experience, families telling their stories, and the quality and just really making heart connections in that way.
We have lots of training and communication in grief, we do training on all of our parent guides on how to handle difficult conversations, grief cycle, how to be professional, how to handle security measures, so on and so forth.
We offer advocacy and support.  This one is near and dear to my heart, but we build community connections and foster relationships.
So one of the things that I have enjoyed so much about my position here is that I love building community, because I am not going to be everyone's cup of tea.
So, as parent guides, we have five currently in Oregon, they're going to call families, and you'll hear about this through the contract, but they'll call a family, offer support, resources, check in, encourage EI, so on and so forth, but beyond that, we create community events, parents' night out, family camp, toddler coffee morning play groups, where parents can meet other parents and connect with a person they will really connect with.
To think that five of the people in Oregon are going to connect well with every person that we call, that we have referred to us, is just impossible.
So we create these communities and make a great resource and network for people to find their people and to be well supported because of that.  
>> All right.  So we're going to talk a little bit about what makes our collaboration special and unique, we're all special and unique.
Guide By Your Side started in Oregon in 2009 and in the beginning, the coordinator was a public health employee part‑time, she was embedded in our team, she had full access to our data system, and so she started within us in many ways.
And over time, the program changed in terms of organization and some of the structure and the relationship, the coordinator role moved out into a contract for the overall services that Guide By Your Side provides to the families that we part matter with them for.
But during all of that, we held onto this foundational belief and value in trying to assure that parents have the opportunity to connect with other parents during a potentially difficult time.
So, to support that, we created a referral module in our database and this enables our audiologists when they report a diagnosis to our program to launch out referrals.  So they can launch a referral to Guide By Your Side, they can send a referral for public health nursing for whom visiting services, and they can send a referral for early intervention right then at that time of reporting.
The referrals for Guide By Your Side are sent to Amanda as the coordinator and they go without any private health information, they go with a specific unique code, that's the identifier for that child, and that gives access into our database for that child, and that child's information.
We alongside of that process, the EHDI program is communicating with the family and with the child's healthcare provider, so we're sending a letter to both of those, to the family and providers and say hey, there's other services and supports that your family might benefit from, talk with this family about that or, family, be informed.
And if you haven't heard from these services and supports, you can reach out directly and engage with them.
We've learned that some of these pieces have taken trust on the part of the audiology community to feel confident in making a referral to the Guide By Your Side program, to, you know, families serving families and we've seen that trust grow and build over the years.  And I think that's a great credit to the work that Amanda and her team have done to really become a trusted resource in communities for families.
The other piece of this that we did in Oregon is we sought a legal opinion from our Attorney General so we asked specifically can we make a referral of a family to a family serving organization, family‑based family serving organization without expressed consent?
And can we share data with them?
And they said, their answer, in Oregon, and every state when you look at one state, you look at one state when I think it comes to these sorts of things, so good luck to you if you try this.
But in our state, the finding was that it's always best if you make a notification to a parent that outreach is coming, but yes, we could go ahead and make that referral.  That's fine.  And it's within bounds.
And yes, we can share data, but we need to hold to a minimum data standard.  And will only provide the data necessary for them to do the piece of work we're asking them to do.
So from the beginning, again, the guides and the coordinator have had access to our system.  It's just part of our history of working together.
And we think that's a valuable thing.  We think it's a positive thing.  It promotes information sharing, coordination, collaboration, it's providing this seamless experience for the families that we serve.  
And it's possible because within our database, we have this opportunity for role‑based access that gives folks specific access to specific children and specific data fields within that child's record for them to be able to perform whatever the core function is they're trying to do.  And that helps us meet that minimum data standard.
This is supported by some of the requirements that we have for our parent mentors, so in Oregon, parent mentors fulfill two trainings, that actually all public health division staff has to do, they do the same trainings we do, and those are the privacy and security trainings and mandatory reporter trainings.
We require a state background check, we have a confidentiality waiver on file, and we do training and on‑demand assistance as well for our guides as they're working in our data system and within our program.  
>> Okay.  So Heather just explained really how the logistical pieces have made it possible for us to partner in this way, which has been a huge, huge gift to us as an organization, to use our database, to have close contact with them, to go through all of the security trainings and everything so we can be really responsible with this information.
This area that I'm going to tackle is how do we actually work together with such different entities?
We are so different than one another, like we just showed you.
So one thing is we have a shared goal and we've identified it.  We want to help children with hearing loss succeed, get through the system in the birth to three years and make the 1‑3‑6 schools and we agree with all of those things and want to do that, as well as build a community so that parents can feel supported on that journey.
Oh, these are all going to come up funny.  Hold on while I put them all up.
Okay.  Secondly, we engage in crucial conversations.  There have been many times that Heather and I call each other or e‑mail and say we need to talk on the phone or meet together halfway and say I have something difficult to bring up, and then we talk about those things, and it's hard.
And you're one person representing the organization or the health department, so you also have to be careful with what you're saying and how you're explaining things.
But we continue to engage in it.  We give each other time if we need to to go back to our people in order to confer with them, and we engage in really tough conversations.
And I would encourage you, if you're thinking about doing this, only do it if you're feeling brave. 
[Laughter]. 
>> Because it's super hard to do sometimes!
Next, we also keep short accounts.  If there's a grievance or some trust that has been broken, then we work at coming to each other and saying I heard this, you know, I didn't hear this from you, but I heard this around the corner from you.  Is this true?  How do you feel about this?  What are your intentions?
Because we want to keep the integrity of our relationship intact, so if you're ever wondering if the person you're working with is not trustworthy, you have to keep accounts and be honest and engage in conversations that get you somewhere down the line of trust so you can continue to build on that and make a greater partnership in the end.
Next we value one another's strengths, differences, and input.  I could never, ever, in my wildest dreams create a database or like in an infrastructure that actually captures all of Oregon children and who saw them and what they need done next and how it goes and enter the data system and all of the people that work in there, they're amazing and they offer something that is such a gift to our organization.  I can't even conjure it up, I can't even in my mind.
But for us, we also offer parent experience, stories for other parents to connect with, someone that's, like, easier to trust sometimes than the health department ‑‑ no offense!  
[Laughter]. 
>> I value the health department so much!  I value my audiologist and all of them across the state so much.  The early intervention is every single part of the whole system.
We value one another and know how to rely on one another for their strengths.
And cover each other in our weaknesses as well.
Next, we need to be willing to redefine the relationship.  As Heather mentioned, we started off in the health department and then have contracted out and changed it and adjusted it, we'll get into our contracts later, but even then we are always reassessing, what do we want to do and what are our goals together and is this appropriate still?
Don't make assumptions.  If you think, gosh, I wonder if they're thinking this, you can Google Brana (sp) Brown, she has the FSD, you call it the stormy first drive and sometimes you call it ‑‑ it rhymes with pity, you have a stormy first draft and you say the story I'm telling myself in my head is this and this and this and that allows your partner to say yes, that's true, or no, that's not true, let me clarify that for you.
So when we're talking about communicating, we all come from such different backgrounds and educations and families and all these things, areas of the state even, and so it's really important to communicate through our differences, through our concerns, through all of our challenges so that we can actually come back to our goal that we have together, understand one another, and trust one another.
And then lastly, we want to look for integrity, stewardship, trustworthiness, and accountability, I want to say that find an organization that's trustworthy but Heather made a point, that's really grown through time, you don't know if the person you're working with is going to be trustworthy, which is why there's all those safety things put in place that they had, they sought legal advice, we have a contract that's very defined on what to do and that kind of stuff builds trust to work with one another to show that you're doing what you're asked to do.
And likewise, we trust them more and more and more as we see them have their backs and appreciate our differences.  
[Pause]. 
>> So, over the years, our contract has changed, it's evolved, we've experimented with different activities within the scope of work, and what you see here are the main components of the current contract between the EHDI program and the Guide By Your Side program in Oregon, and you'll recognize, for those of you from the EHDI world, a lot of this relates strongly to our HRSA grant requirements.
And this is a joint ‑‑ a mutually‑agreed upon scope of work, so this was a contract between informed by both Guide By Your Side, Hands & Voices of Oregon, and the EHDI program and you would see things that you would expect.
Like what happens after a referral is sent to Guide By Your Side?  What are the expectations of how they're serving that family?  As well as many other pieces relating to participation in the Advisory Committee, things like leadership trainings and events and trainings for family members.
There is some reciprocation we've built into the contract and we support them to go do professional development, to go to the annual Hands & Voices conference and things like that, but we ask them to invite us to their annual training so that we can be their partners in that and have that ongoing dialogue.  It's built in, it's baked in.
And then some new pieces of work that we're really excited about this upcoming year, things like partnering around a survey and starting to work with a Deaf program in Oregon which is what we know we need to have and make some connections that they can bring that to us in our program with our planning.  
>> Okay.  So, families and programs definitely benefit from this collaboration.
This is a picture that was taken at our family camp in October, we were able to do it because of the HRSA grant and because of EHDI being gracious towards us and giving us the money to put on this amazing camp.
Over 100 people came to it.  We had a deaf adult panel and that was really the parents favorite thing was hearing from deaf adults and to be able to ask questions.
We also had audiologists come and share, same thing, they were able to do Q&A and talk about any questions they hadn't had answered yet.
One of the biggest thing from family camp that we heard was just that parents were so glad to not be isolated and be alone anymore.
They did what I had mentioned about, you know, made friends with other people that I didn't even know they would make friends with and continue to nurture those relationships and friendships through Facebook or e‑mail, getting together.
I turned around, my husband's making plans with a guy that's three hours away and it's just so fun!
Another beautiful thing is watching siblings that are hearing be in this world that's immersed with them.  It's just families that look like them [voice cracking].  It's really powerful.
So, keep moving on to benefits for families.  There are authentic connections made to allow for filling in the gaps.  One of the parent guides recently called a foster mom and was checking in on the foster baby, making sure they were getting through the services that they need, and foster mom said oh, yeah, and this child has a sibling who passed the newborn hearing screening but also has hearing loss and so through that, the parent guide for Guide By Your Side was able to e‑mail EHDI, very easily through the system, e‑mail them and say hey, we found another baby.  And that's another kid that just got found simply by just filling in that gap and being in the authentic kind of connection.
There are peer‑to‑peer connections which support healthy emotions.
Who here made a new years resolution?  Okay.  A few people.
Who here has still kept their new year's resolution?  Whoa!  Quite a few of you!
This is something I was thinking about, so often I know what I need to do but actually doing it is so hard to do, so it's not until my feelings can connect with this whole thing that I can actually do what I need to do.
So how does this translate within the EHDI system?  I know I needed to go call the audiologist or make it to that appointment or call the early interventionist or show up for that appointment or reach out to somebody else because I didn't like that early interventionist, if I can't take care of my feelings, I can't do what I need to do and with peer‑to‑peer connections, there's so much empathy and I've been there and I've done that, I don't need to fix it for you but I see you in it, it's hard, I'm sorry.  Tell me when you're ready to make the call [chuckles] or if you need me to sit here with you, I'll do it for you.  But until you're ready, I'm just here.
There's something so powerful about being seen in that space that it really, truly catapults you in being compliant with the system.
We joke around the word "compliant."  I love following rules, I wish we all followed rules and I love being compliant and I wish families can with their head and heart to make decisions to be compliant with a system that is serving them, that's going to teach their child language, that will take them operate in society and learn for the rest of their lives simply by following this very well made system that they've got going on.
Which leads me to early intervention that gets explained more clearly [chuckles].  I talk to families and they will be, like, no, I didn't want EI because my grandma told me that they were going to take my baby to a classroom for, like, special ed kids [chuckles] and I'm, like, well.... okay, so that's not true [laughs] and let me clarify.
And just sharing with families what it actually is about.
I had a mom who thought that her audiologist was coming to her house 2‑4 times a month.  Listen, listen.... oh, no, that's the teacher of the deaf, she's going to teach you how to communicate with your child, you know, all the questions you don't even know you have, she's going to answer, so you definitely want her in your pocket and you want her to come as often as she can, so being able to clarify with the families is a benefit for the families.  And then the support network.
I'm going to skip past this one for time.  
>> So for EHDI, the benefits are clear, we gain an authentic parent voice from lived parent experience that's relatable for other parents, you know.  What more could you ask for?
These folks are able to reach into communities and build connections and support families in a way that a state program never could.
They help us actualize our values and invest where our values are, so we're putting our money where our intentions are.  
We're promoting and supporting community partners and family service.
As Amanda mentioned, they help us with case finding.  Who knew that would be an outcome of this partnership, that we learn about other kiddos with hearing loss that are able to document that and assure that they're connected to the services and supports that they need.
And then those pieces about reinforcing positive messaging about early intervention and being part of our broader services of coordinating services for each child.  
>> And then the benefits for Guide By Your Side is that we get referrals right away to be able to connect with families in a very timely manner.
We have access to the data in a very minimum way, only what's necessary to make those good connections and keep everyone in compliance.
There's the database, we don't have to enter data into an Excel document, we just have it all within the state's system, which is also that we have technical assistance, they have some ‑‑ they have this woman that knows her technology, she's amazing, we're always like this to her, any time we see her.
And then there is on demand reports for next steps.
For people that say I'm not really ready for you, Guide By Your Side, we say okay, can we check on you in six months?  A year?  You know, somewhere in there?
And oftentimes they'll say yes and it's a good thing they said yes, because then that's when they actually want help, but with their next steps button already built into the system, we know when to call them back and what to do next and we can network and work with the entire EHDI team.
>> All right.  So we want to leave you with some considerations to think about if you're trying to strengthen or build your own relationship in your state between your EHDI program and your parent‑based parent serving organization.
And I think Amanda and I kind of came to some ah‑has ourselves as we were working on this presentation together, it strengthened our relationship, which is pretty awesome, and I think what we realized is we both wanted to come to this partnership with a whole heart, and it forced us to sort of sit down and think about what does that mean for each of us and what is that going to take to get there.
And these are some of those considerations for us.
So thinking about your organizational values and constraints and where does that leave you, and what do you need to do within that?
Thinking about, for me, again, as a state employee, what do I need to do?  What do I need to be in place to have confidence?  Making a referral, handing ‑‑ doing this warm handoff of this vulnerable family to this organization.  What do I need to feel secure about that?
And for us, that happens to be those pieces around data system protections, data review, personnel requirements in the contract and more than that, it's the pieces around relationship and trust and communication.  Open lines of communication and collaboration and always coming to each other in a way that Amanda has described.
So, we feel that this relationship has transcended the challenges.  We've had some bumps and knocks along the way, but the value to our families and to our programs far exceeds those challenges.
So, we'll leave it there.
And I don't know if there's time for Q&A but we're happy to answer any questions.  
[Applause]. 
>> Do you want to go back to the.... 
>> Oh, sure.  Thank you.
Are there any questions?  
[Pause].
>> Hi, my name is Jason, and I'm wondering about when [Speaking softly; unable to clearly hear]. 
>> Are they recruited by parents who know English and sign or are they able to provide non‑biased information, so when you're going as a guide, you know, someone is curious about wanting to know and learn more, how does that process work?  
>> Oftentimes that was handled a lot of times through early intervention through my family, but as guides, we offer unbiased support and in our first phone call, we say we support you no matter what and the reason we're here, sometimes there are wars between modalities and we want you to know whatever is best for the child is what makes the choice right.
Is that the question you're.... does that answer your question?  
[Pause]. 
>> Oh, and then we also find guides by parents, by providers. 
>> I'm not saying to encourage anything, but I'm asking if the Guide By Your Side goes with a parent and if the parent asks a question and they're curious and they want to know more about ASL. 
>> Yes, we search out ‑‑ 
>> Guide By Your Side knows all of that information. 
>> Yes, thank you for asking that.  We search out answers if we don't know them and we know the opportunities throughout our state.
One more question I saw?  Two more?
Okay, we're good.  
>> [Away from microphone and unable to clearly hear]. 
>> Sure, and we have a sender of those referrals in the audience ‑‑ oh, should we repeat the question?
So the question was to I think expand a little bit on the referral that has the unique code?  Okay.
So each code in our data system as a child is coming into our data system from the birth registry, we have a census of all of our babies in Oregon and each baby has a unique code, that's their identifier, and so when we make a referral to Guide By Your Side, we send that number, and our parent coordinator has secure access to our system and she can go in and look that number up, and behind the scenes, we've given her access to that baby so she can see that baby.  Does that help?  
>> I think anymore questions, feel free to come up to us or right at the back of the room, probably.  Thank you.  
[Applause].
[End of session] 

** Communication Access Realtime Translation (CART) is provided in order to facilitate communication accessibility.  CART Captioning and this realtime file may not be a totally verbatim record of the proceedings. **