ROUGH EDITED COPY

EHDI 2019
TOPICAL SESSION 7 - INTERNATIONAL A
USING THE FL3 NEEDS ASSESSMENT TO INFORM EHDI PROGRAM IMPROVEMENT
MARCH 5, 2019
3:00 P.M. CST

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

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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.  
***
	>> Okay.  I think we're ready to go.  All right we're going to go ahead and get started.  We appreciate you all having the tenacity to stick with us late in the day and then late in the end of a very long exciting conference.  So just to make sure you're in the right session we're going to be talking about using the FL3 or Family Leadership and Language Learning Needs Assessment to inform EHDI system improvement.  
	We have nothing to disclose our than we're amazing.  
	And then who we are, my name is Alyson Ward I work at the National Center for Hearing Assessment and Management.  I am the director of quality improvement there and then I'm also involved in a lot of other things.  And Hands & Voices when they received the FL3 Cooperative Agreement subcontracted with NCHAM to help them conduct their Needs Assessment.  
	So NCHAM, we have the National Technical Resource Center Cooperative Agreement for HRSA for all of the technical assistance state and territory island early hearing detection and early intervention programs we do all sorts of things out of our center so if you need a one-stop shop for lots of EHDI system related information go to infanthearing.org and that's our Web site and I'll let Vicki introduce herself.
	>> VICKI HUNTING:  Hi I'm Vicki Hunting I am with Iowa Hands & Voices.  And Alyson and I worked on this Needs Assessment together so thank you for coming to this three-hour presentation.  Sorry, just kidding.  
(Chuckles).
	>> VICKI HUNTING:  So Hands & Voices is a parent-driven nonprofit organization.  We focus on emotional support, information services and dissemination and modeling and advocacy for parents.  This report was directed to us by HRSA through our contract with them our -- I can't even think.  My head is winding down.  Through our Cooperative Agreement with HRSA.  
	>> ALYSON WARD:  Okay.  So we did a presentation last year at EHDI.  Summarizing the results of the Needs Assessment so we're not going to go through every -- because that really literally is a three-hour presentation.  
	But what we are going to be focusing on today is the support and resources that families from our survey reported that they received for their child who was either diagnosed as Deaf or Hard of Hearing so we'll do a quick summary of the Needs Assessment and we'll discuss again the specific areas of needs, the support and resources families reported and then we're going to actually make you move and talk to one another because that's what we do, we like to push people out of their comfort zone and actually make them have to talk to their colleagues.  
	So we'll spend a little time in workgroups.  And then a quick reportout based on some of the conversation that you have in your workgroups.  
	Quick agenda, we did our introductions, Vicki will go over the background and purpose of the FL3 Needs Assessment and then we'll dig into results, move into group discussion, reportout, wrap up.  It's all like a nice tightly wrapped package.
	>> VICKI HUNTING:  I feel like we're running through this but we have a lot to cram in.  
	So why did we do this name Needs Assessment?  This assessment was designed to take an in-depth look at the needs of families, family based organizations that were contracted by the Newborn Hearing Screening programs for states and U.S. jurisdictions and then also to work with the EHDI programs in each state and territory and so that's all part of the direction for this National Needs Assessment.  So overall the results that families -- what families reported was that they wanted to be -- receive -- be in receipt of comprehensive information about services and supports at different levels throughout their journey and their child's life.  They liked coordinated and trusted resources and contact with and support with from other parents who share their lived experience.  Increased support for underserved families.  Access to Deaf and Hard of Hearing adults, mentors, role models, guides.  And so we're going to dig into just these couple of pieces this afternoon.  EHDI coordinators that responded to the survey responded that they needed a clear delineation of responsibilities.  And for their contracted FBOs.  FBOs.  Family based orgs.  They also wanted strategies to establish a coordinated -- coordinated partnerships with their FBOs and ways to work with the FBOs and parents to address barriers to involvement and leadership.  And then also tools to provide consistent and accurate information and resources to families.  
	The family based orgs reported they needed training in working with families of diverse backgrounds.  And diverse communication choices.  They also needed familiarity with Deaf and Hard of Hearing resources and to be able to train their parents at all levels in the EHDI system.  
	They also wanted to be able to better offer families a variety of activities in different formats.  And they were looking for strategies that engage families from not only underserved populations but also to have a better understanding of the EHDI system, including clear expectations and deliverables from their EHDI Program.  
	So there's a lot of crossover in understanding who is going to do what, understanding what the roles are.  This is a brand-new Cooperative Agreement.  I think it's still in the honeymoon stage because we're still trying to figure this out, since it is a brand-new agreement.  
	Just a little bit about the demographics to bring that piece in, we had over 1,000 respondents to the survey and 458 of those were parents.  
	For children ages 0 to 6.  
	We did allow parents to fill out -- complete the survey up to age 18.  That's another area that we may dig into a little later is comparing that 0 to 6 population to the age 7 to 18.  What I want that data to tell us is that we are doing an awesome job as we have learned more and kids get older that we've learned a lot from that older group.  So we'll have to see what the data tells us.  
	So 86% of the total surveys came through social media.  It's hard to -- we don't know the N of the number of children, the -- for social media.  
	So we're unable to calculate a response rate for that.  
	The interesting thing was that when we posted this through our system and also through Family Voices, the PTIs, the F2F HICs the family to family health information centers once we put that out on social media, in 24 hours over 10,000 people saw the post.  
	So if you know a little bit about analytics from Facebook it doesn't necessarily mean that 10,000 people read it but it appeared in their feed as they went by and then it was shared over 100 times and 600 people took the survey within 24 hours.  So we were pretty blown away by just the reach of that and how that exponentially grew.  
	Another demographic on here is that 21% of the families who participated met or were need the Medicaid eligibility of 138% of the Federal poverty level for a family of 4.  And over half of the parents responded that their child met the goal of being diagnosed by three months of age.  And then nearly a quarter, 21% of parents responded that their child was diagnosed after one year of age.  
	But it's unclear if the delayed diagnosis was due to late onset or misscreenings or Loss to Follow-up.  So we don't know that information.  
	All right.  You're up.
	>> ALYSON WARD:  All right.  So one thing I just want to highlight, the nature of a Needs Assessment is really to kind of get a pulse of what's happening.  And it's not necessarily an evaluation which puts a judgment on whether we're doing a good job or not.  It's really to inform us of where we still need to do some work.  Where we can seek some improvements.  So I just want to frame it in that as we move forward and go into a little bit more detail.  
	So this question asks the families what types of support they received after their child was diagnosed as Deaf or Hard of Hearing.  And support really had to do more with like connections that families received.  And in a minute Vicki will talk more about resources which actually had to be -- which was more like a physical resource versus support parents felt.  
	And I wasn't planning on reading it to you.  But since from the back of the room -- let me see.  From the back of the room it looks like this is in .05 font, and so I'm going to go ahead and just go through these a little bit more.  
	So -- oh, darn.  Hold on.  Give me a sec.  I'll get it together.  Okay.  Here we go.  
	So again, there's kind of this laundry list that parents could select.  Mark all that apply essentially.  
	So the first one is help getting connection to early intervention services.  And that came out at 57%.  
	The second one is offer to participate in parent activities.  That came out at 51%.  
	Connection with other families who have a child who is Deaf or Hard of Hearing.  That came out at 49%.  
	Provided information about communication options.  That came out at 38%.  
	Help getting a hearing test is at -- I've got to follow it now, let's see, 34%.  
	Help getting connection to community services is at 32% -- let's see.  I might be getting the lines crossed here.  32%.  Training with families -- I know I'm like wait, which one maybe I've got to stand in front of it.  Training with families is at 30.  Support from formal Parent to Parent is at 28.  Given appointment reminders is at 27%.  Help sharing information with your child's doctor is at 20%.  Assistance with finances is at 20%.  
	Help getting connected to a Deaf or hard-of-hearing role model is at 15% and other is at 2%.  
	And if I cross the lines and repeated a statistic you guys can look up this specific chart.  We have uploaded it into the EHDI meeting Web site so you can check out the specific statistics there.  
	And then we did a follow-up question about what -- who were the providers that provided that support.  
	So audiologists came out at 58%.  Early intervention also came out at 50%.  Family based organizations at 28%.  Physicians at 28% and Web site or social media came out at 27%.  
	So just some interesting things that came out of that.  In general, the receipt of support is not as high as we were hoping that it would be.  I mean the top three definitely hit over that 50%.  But there's some of these things that we want to be at like 99.9%.  And again, this is really an opportunity to learn.  And there's also some pieces between information that was provided or support that was provided.  But there's also a perception piece in there, as well.  
	So even if they received it like let's say a physical referral or a physical Web site address or something like that, if the parents didn't perceive that as being given as support, that's what this -- these responses are going to reflect.  And we want them to perceive that they are given that support.  
	So it really leaves the remaining nine supports received by less than half of the parents surveyed.  And so again, this is an opportunity to reflect what are we providing to parents from audiologists, from early intervention providers, from physicians, from the EHDI Program et cetera that parents are not only receiving but also perceiving they are receiving it, if that makes sense.  
	Additionally the top support received and who provided these resources are really correlated.  
	For example, 57% of the parents responded that they had support connecting to -- early intervention and early intervention providers and audiologists were in the top five providers providing that support really does make sense.  So we did find some correlation in there.  And that's some of that correlation Vicki and I plan on taking a deeper dive in as we get more into the data of the Needs Assessment.  
	Okay.  It's you --
	>> VICKI HUNTING:  You have one more.
	>> ALYSON WARD:  Oh I have one more?  Oh, okay.  
	And I'm not going to go into a ton of detail about this.  But again, we did break down from ages 0 to 6 as Vicki mentioned because we felt that that was more reflective of the current EHDI system so that's all of the information that was included in the actual Needs Assessment report.  Versus all of the respondents which could have been you know a baby that was three days old to age 20 -- I can't even remember.  To age 18.  That's right.  Age 18.  
	And so there are some differences.  You can see who you would suspect would be the providers early on, which would be probably more like the child's audiologist and EHDI Newborn Hearing Screening staff and then later on it kind of moves more into the child's school, early intervention, which is a trend that we would expect to see.  
	Okay.  I know.  We're such talkers.
	>> VICKI HUNTING:  Okay.  So the next area we just talked about the types of services.  Now we're going to talk about the types of resources that families received.  And I'm not even going to look up there.  
	Just to highlight the top ones, 51%, the green bar is use everyday activities to learn language.  Those were the kinds of resources that family received.  Monitoring your child's language milestone was 49%.  
	Monitoring if your child is progressing in their social and emotional development, 46%.  
	Understand your legal rights, 39%.  
	Read a book to your child, 32%.  
	Teach your child to play independently only 20% received that kind of resource.  
	Helping your child to play with friends, 18%.  And teach your child to read, 15%.  
	On the right side of that, this is the top ones that they were given a list of options pertaining to their development and were asked to select these resources.  So that's where that came in.  And then who provided those resources.  
	So again, during that cross referencing that we did, we kind of pulled out the pieces that said that they were already involved with their EHDI programs or with their family based orgs.  And those who reported that they were involved with their programs, 72% reported they received resources helping them understand their legal rights.  So it's unclear whether they got more resources because they were involved with their programs or they understand the resources because they were involved so it's unclear in that way.  So this is kind of an interesting comparison.  The black bold is the top 5 in each of those lists and it has the ranking.  But it's interesting to see and not surprising that audiologists remained the second one throughout the life span of these kids.  So thinking about how audiologists play into this, they are the ones, especially -- you know, for parents who chose amplification or something, the audiologist is top in that throughout the life span.  
	>> ALYSON WARD:  So we want to make sure we have time to break out and have some discussion but we had another question in here that we posed where families would like more guidance and had four different areas, one was understanding what language or communication is expected of your child at different ages, knowing what to expect of your child's emotional control and behavior.  Knowing how your child's skills grow when you are sharing a book.  Understanding the ways your child should relate with others at different ages.  And a lot of this -- a lot of these questions really came from we did an extensive literature search before we -- to try to understand what things are already answered from other research that's been done and what do we still need to find out.  And so in looking at these pieces, that's really why we came to these three questions -- these three main questions for parents.  You can see really these are fairly evenly distributed in each of those areas.  But in looking at the areas of not much more guidance needed somewhat more guidance needed and more guidance needed, it's really about three-quarters on each of those that parents are saying yeah we would like at least a little bit information about that to we really need more guidance there so essentially all of these areas could be bolstered extensively.  So what we're going to do at this point we're going to have some group discussion.  We have some worksheets.  
	>> VICKI HUNTING:  Are you going to assign numbers?  Well you can do it if you're going to do it.  We have four areas that we just want you to have a discussion with the people around you.  The first one is about improving family's access to parent support.  You know just some ideas that you might have about challenges or opportunities or ideas about how to increase parent and family participation in those events.  
	No. 2, improving family's access to community services.  What have you seen that's successful?  What ideas do you have?  What barriers have you run into?  And how might you solve those?  
	No. 3 -- and you don't have to do all of them.  I think -- are you giving them which number to do?  
	>> ALYSON WARD:  No I thought we just said we were going to do --
	>> VICKI HUNTING:  Okay.  This half of the room, you do Question 1.  The back half do Question 2.  You guys do Question 3.  And then the back half -- I don't have my glasses on.  Do Question 4.  
	So just have some discussions about each of these.  And we're going to give you five minutes.  Ten -- five minutes.  And then we'll just have you guys shout out some of the things that you learned in your discussion.  Five, six minutes maybe.  
	( Small group discussion).
	>> VICKI HUNTING:  Okay.  Let's wrap it up.  I'm sorry; you know you submit these presentations and you expect an hour and then you get like 25 minutes.  So you're trying to cram it all in really quickly.  I think we'll just go around and have each group just somebody talk about some of the things that they discussed.  
	We would like your sheets, if you're interested in leaving them behind.  We like to get that feedback or let us take a picture of it since we're not taking notes.  
	>> ALYSON WARD:  Okay.  Let's go ahead and start with this group here, who is your spokesperson?  
	>> VICKI HUNTING:  Improving family's access to parent support.  
	>> ALYSON WARD:  Okay just nominate a spokesperson oh that's you guys.  Other.
	>> VICKI HUNTING:  I counted backwards.
	>> Okay so we just quickly figured out who we were as a group and we're EHDI staff.  And EHDI parents and then a researcher.  
	So we got -- basically it's EHDI staff at least was our group the thing we do to improve family access to parent support is direct referral of the family to a parent support organization with verbal consent at the vermin mum.  And then as far as the parents, in our group anyway it was mostly barriers that they did not receive direct referral of these families so that's really a huge barrier for them to do anything to increase parent support.  
	>> VICKI HUNTING:  Thanks.  Group 2 improving family's access to community services.  Back.  
	>> Good afternoon.  Our group discussed getting a list of resources from just trusted places that parents wanted on a Web site that everybody could access and actually having someone as information changes as it does to update the links and as more things become available.  And then if there's a population that doesn't have easy access to the Internet, having some of those resources in a printed form.  
	We also discussed using resources that Virginia had developed.  As far as their resource guides.  Just making those available, as well.  They have done some great work there.  So that's what we talked about.
	>> VICKI HUNTING:  Awesome.  Group 3 back up here in the front how to improve family's knowledge of language literacy and social emotional development.  That's okay.  Report on what you've got.  Here you go.  You're among friends.
	>> I've been voluntold.  So we all came from -- we're all coming from different areas.  
	So my main concern is always it's a different conversation to have because there's other -- there may be other needs.  Right?  So how do you then improve a family's knowledge?  You don't want to assume that they don't have that knowledge, either.  So you're developing a relationship with them.  We have handouts.  We have -- we can give them information.  There's CDC milestones information.  Providers can be there to provide that.  The Service Coordinators.  But when do you realize there are language and social emotional issues?  I mean a child still has to have a completely evaluation, right?  So a conversation can start there.  But I think it takes a while to do that.  Right?  
	What are some of the barriers?  
	>> So as -- so I was obviously documenting this as we were discussing.  Some of the potential barriers for consideration is that providers may or may not have done their due diligence in validating that the parents have the appropriate knowledge and continuing to form that relationship.  
	So it's always a balancing act of course in making sure that the parents or the family have access to that information.  And if there's additional information to ensure that the door is always open for additional questions.
	>> VICKI HUNTING:  Great comment.  We are now at time.  
	>> ALYSON WARD:  I show we have 30 seconds.  
	>> VICKI HUNTING:  Okay.  It says 31 up here.  Okay.  Go for it.
	>> So we were No. 4.  Ideas for providing leadership training to families.  And we felt that that started first like within the audiology and intervention programs with information training first so that parents can then become advocates and really assisting them to become advocates first for their own child.  And then moving into more formal organized programs like the Hands & Voices leadership training and making sure that they are aware of some of those more formal resources.  
	>> VICKI HUNTING:  Great.  Thank you.  All of these charts that we showed today are in the Needs Assessment report.  And the access -- the links are here for this.  Thank you for letting us giving you a drink with a fire hose and thank you for coming we appreciate it you can drop the sheets in the back door with your evals.  We appreciate it. 

***
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.  
***