ROUGH EDITED COPY

EHDI Conference‑Parents Reflect on the 2013 JCIH Early

Intervention Recommendations

3/10/15

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>>  It is 9:40 exactly, so I do want to get started, because the document that this presentation is based on has 12 goals and they all have sub goals.  And I'm not going to cover every single sub goal, but I would like to get through all the 12 goals which is great that we have an hour to do that.  And I would also like some time for interaction.

So I'm going to go ahead and get started.  I just wanted to recognize first of all that I have got some of the Georgia crew I see.  I see Clara back there and folks up here and they told me to make sure I'm not throwing Georgia under the bus today, and that is not my goal at all.  But speaking from the very honored position that I have as a parent representative from AG Bell to the Joint Committee on Infant Hearing, I feel like I really wanted to take this document that we produced and published in 2013 and have it have some legs because a document is just a document unless you use it.  And we all have to start from somewhere and our baseline is our baseline.  And then that just allows us to gather the motivation to move forward and make changes.  And I even think in the last 2 years, since the parents from Hands & Voices reflected on this document together, that we have made some amazing changes in the state so far.  So that is my disclaimer.

But there are going to be some hard things in here to share, and I think it is just a good honest look and a good reflection.  I will say we are not ‑‑ we did not do this in an academic or scientific way, this is not an analysis.  You see the title does not have the word analysis in it.  I was very deliberate about that because it was really a reflection and a discussion from the parental point of view.

I'm Carianne Muse.  And I just rolled off the Georgia Hands & Voices board as the president and I'm going into an advisory role and Terri Patterson is listed as a co‑presenter, which she is up here and going to add things in as we go or things that I had missed.  She is the executive director of Georgia Hands & Voices and we together led a small group of parents to look at the JSIH in 2013, and that's what this presentation is based on.

It was doing it before.  Of course.  I have been in here for 30 minutes and now it is not going to work.  Let's see.  Hmm.  My clicker may have died.

Nope.  So I think I'm going to have to move myself a little this way, which is fine.

Okay.  So here are the learning objectives for today.  We are really going to discuss the process very briefly of what we did as a Hands & Voices parent group to go through the JCIH supplement on Early Intervention.  We are going to talk about the key recommendations that we made, and discuss the changes that have occurred in Georgia since 2013.  Really, the purpose of sharing this process is to hopefully have something that parents can maybe take back, professionals could take back to think about how to involve and engage parents in looking at this.

And this is my inspiration for being here.  These are my children.  The middle one is 8, and she is the only hearing sibling of the 3.  My other daughter, Ella, Avery, Ella is profoundly deaf, and Wyatt is almost 2 and is unilateral.  And they have 2 completely different anatomical conditions so we are always amazed by how we ended up in this place because it is unlikely that that is to happen in a family.  And so I take that very seriously, because that means that I'm supposed to do something with this special family that I have.

Okay.  So this is the sort of front cover of the supplement that we had in pediatrics from the JCIH.  The full ‑‑ I'm going to move for a second.  The full title is Supplement to the JCIH 2007 Position Statement, Principles and Guidelines for Early Intervention After Confirmation That a Child is Deaf or Hard‑of‑Hearing.  So it really is focusing on the I, in EHDI, not so much on the detection and enrollment.

So why do we care about parents?  There are several parents on the JCIH committee, this is actually an older picture, it was taken in November of 2013, so some of the members have changed since then, and you can see me down there, second from the right.  And they really try to integrate the experience of parents into the conversation.  All of the work that's done is evidence‑based so that can be reproduced in a scientific journal.  So that's ‑‑ and the aim is always for pediatrics so we can get as many positions as possible involved in understanding what's required.

The 90 percent or greater was really what made me think that parents have sort of both an obligation and a right and interest in looking at what's in this document, and analyzing both what they received and also what they should be asking from a policy perspective of the State Early Intervention services.  90 percent or greater are territory report that they are getting the EI services as represented in this document.  That is the measurement stated in the supplement.

So that is really what you are working toward.  When you can get that, then the spirit of the document has been fulfilled in your state.  So here is sort of the timeline of what we did.  In the spring after the document came out, document was published in April, this was immediately after the publication, the board, president, which was me at the time, comparing what we had in the state, and then we brought it to a larger group of parents, both in person, on the phone, received a lot of emails, we passed around ideas, and we got together face‑to‑face, about 5 of us, to go through a good portion of the goals.  And then I sort of tied it up as best as I could in a neat little bow and sent it off in June of 2013 to a collaborative group called Georgia Pathway to Language and Literacy, which I think is the coming stakeholder group in Georgia.  And I will get to that later.

So we did submit that.  The Georgia Pathway Submit happened on June 2013.  And it was sort of a turning point for Georgia.  So the Department of Public Health, the lead for the Department of Public Health stood up at that meeting and declared that all of the babies born in 2014 are ‑‑ first 100 babies born in 2014 with hearing loss would get all the services they need to reach literacy.  So that was sort of a big happening.  I'm not sure that the document pushed that, I think it was the interaction of the submit, but just good to note that for timeline purposes.
And then we actually had another submit just the other day, and there is a little bit of data in this presentation about our March 6th submit.

So these are sort of the bold statements that we put in the introduction of our reflection document that we sent to Georgia Pathway.  These were in the JCIH version, and I think they are really important.  So I'm going to read through these.  Without appropriate individualized targets and high quality Early Intervention the screening and confirmation that a child is JCIH is meaningless.  In order for a child to reach full potential, Early Intervention services need to be promptly administered using research‑based services, best practices, and proven models.  Providers of services need to have optimal knowledge and skills.  Our definition of optimal is equivalent to highly qualified.  We expect each professional working with our children to be highly qualified and at minimum meeting statewide standards for qualifications as measured by self‑evaluation and observation.  And then the 4th one is despite gaps and evidence in the research, we do have information from literature, systematic reviews and consensus statements about components of programs that work well when administered the same way to all families and can promote the best possible outcomes for children.

So those things were key to our discussion.  So I crossed the backwards timeline, I would point, but it is broken, this is kind of a dark version of our Georgia Pathway to Language and Literacy logo and I will show you why later because I'm going to show you the expanded picture of where that logo is at the end.  But it really is a path through Georgia, and one of the inspirational leaders for that always says we are laying down the bricks in front of each family, trying to make sure that that path is there to language and literacy for every child.  We started out ‑‑ so if you start on the far right side, with a decree from the governor that declared all children in Georgia, all children in Georgia will read on grade level by third grade.  So the folks in education, and Deaf Education specifically, we are not going to let our children who are deaf and hard‑of‑hearing be left out.  So they started having meetings, and a lot of it was focused on reading programs, accessible materials for elementary school‑aged children and trying to figure out how to crack the reading nut in Georgia.

And then in 2011, they moved into professional development programs.  And they thought about launching kind of a virtual school so all professionals who are serving children to help them learn to read along the path would help share the information.  And then finally, the realization came at that 2013 submit, I think, that if the children show up in kindergarten, in preschool, without appropriate language, then they will never get to that third grade benchmark.  So the focus really became on 0 to 3.  So it is just now and in the past maybe 2 years that the focus has been on detection, checking and relationships with the statewide reading initiatives.

This is sort of the list of some of the people who participate.  This is also the exact list of professionals that are recommended participate in collaborative efforts around DHH services in the JCIH document.  The key here is that these people all need to be participating in meaningful and equal ways and we are still working on figuring out how to make sure families are doing that.

This is from our latest submit with pathway that says at the bottom, circled, it says parents voices are critical, are crucial.  We know our kids best.  So we are still thinking about ways to engage parents.

So now let me get to the meat of the presentation, which is about the goals that JCIH came up with.  The next couple of slides, what I'm going to do is show you the goal, show you the sub goals, and then I'm going to talk about Georgia.  And I'm just going to summarize it a little bit at the top so you are not going to get the full goal each time.  The little arrow to the right is going to show you kind of where we assessed it.  Yellow kind of means we are moving forward.  Green is going to be we are doing well, and red is we have a lot of work to do.  So let's look at goal 1.

All children who are DHH and their families have access to timely and coordinated entry into EI programs, supported by a data management system capable of tracking the families and children from confirmation of hearing loss to enrollment in the EI services.  So here is how we are doing.

This is a quick sort of list of statistics on how our entry process is going, and this is more the detection and enrollment part.  So correct me if any of this is wrong, EHDI coordinators in the audience, 97 percent screened by one month of age, and we have about a 40 percent loss to follow‑up rate which has come down significantly in the last couple of years.  (audio skipping) 0 to 3 are enrolled and 42 percent of those diagnosed children are enrolled by 6 months of age.  Other babies born in 2014, 198 were tracking program, and 73 have opted in.  And then we are adapting a public health access model which I will talk about later in the presentation.

So we are definitely moving forward on access.  This has kind of been the focus of all of our work in pathway. 
AUDIENCE MEMBER:  (off mic). 
>>CARIANNE MUSE:  Is that loss to followup to enrollment and intervention?  This is loss to followup to getting to diagnosis.  And this is significant because it is on the continuum to get there.  So we missed 40 percent of them there, they are not going to get to enrollment on time.  Does that answer your question?

Okay.  So goal 2.  And please, if anyone else has questions, feel free to ask.  All children who are DHH experience timely access to service coordinators who have specialized knowledge and skills related to working with individuals who are DHH service coordinators.

So here is our service coordination perception by parents in the state as far as we were concerned when we reviewed this.  We have intake and coordination a little bit ‑‑ trying to work together, but a little bit confusing to you families.  Not sure exactly in the beginning who is the coordinator and who is the person who is supposed to be helping them get into services.  There are 2 agencies that work on this.  We have the AI Part C program, that is responsible for service coordination, but we also have a separate agency that provides services called ‑‑ why am I blanking ‑‑ Georgia Pines, that is our Ski Hi program that sort of does intake.  So the 2 agencies together is sort of all part of that service coordination responsibility, and what JCIH is saying is it really needs to be one point of contact per service coordination.  And then that continues from that first point of entry all the way through with the same person.

There is, we believed at the time, a bit of conflict of interest because the Ski Hi program that is part of Georgia Pines has a service provider role and, therefore, the intake process is done by service provider, and that was something that JCIH was very clear about not doing.  Making sure those 2 roles are separate.

So goal 3 says all children who are DHH from birth‑to‑three and their families have EI providers, professional qualifications and skills to optimize the child's develop and child and family well‑being.  So this is really about adopting guidelines and standardization, and then putting the resources needed to make sure that everyone is doing the same thing in Early Intervention across the state.

We are not standardized at this point.  We have several agencies that serve children and we have not yet addressed the issue of get together and figure out what this standard should be and making sure that everyone who is doing service provision is need meeting the standards.  We don't have any way of measuring at this point across all agencies.

Sometimes for many of the providers who are working in rural areas, the Ski Hi training may be the only thing that they are getting.  And we do have a primary service provider in Georgia, so there are Part C folks that are not part of any deafness specific organization who are providing services as the primary service provider.

So goal 3A, so the sub goal of these, they wanted to make sure they addressed different types of intervention.  So this is about ASL intervention.  Intervention services to teach ASL will be provided by professionals who have need of fluent skills and are trained to teach parents and families of young children.  So not only giving complete and accurate information, but providing that ability for the parents to commit to ASL and to work toward fluency.  That was the spirit of this when we discussed it in JCIH.  And that's kind of the core of how we evaluated how we were doing.

This is continued goal, sub goals for 3A.  So having a quality assurance program, conducting needs assessment and ensuring that all ASL instructors can accept without judgment a family's use of signed skills with or without spoken language.

Okay.  We have got a ‑‑ I promised there are some greens coming up.  We have a red arrow here because the ASL interventionists that we have are not necessarily skilled instructors.  We do get the ability to have a Ski Hi person who may or may not have a skilled instruction certification in ASL and we also get the opportunity to have a deaf mentor if we want one.  Both of those things are offered sort of once a week and we felt like there needed to be more of an immersion type program for families who choose ASL.  We also commented on the lack of the needs assessment and the lack of quality assurance.

So 3B is about listening in spoken language.  The JCIH was very careful about separating ASL and listening spoken language and not paying attention to other types of modalities.  They wanted to focus on the language, the 2 languages, and so they did not address TC, Cued Speech, any of the other interventions.  Only English, spoken English or spoken language, whatever is spoken in the home, and ASL as the primary 2 things to be concerned about when you are looking at intervention services.

So they needed to be ‑‑ ASL services needed to be provided by professionals who have specialized skills and knowledge.  Same kinds of sub goals as ASL, just with a spoken language flair.

So how are we doing here?  Well, our standard as parents was very high for this, which is why we did not meet it.  There is a lot of listening and spoken language chosen, probably 80 percent in the state, almost everyone chooses some sort of the amplification from what we know and we are looking for those trained ASL professionals because we felt like that was sort of the big standard.  We don't think there are enough of those in our state at this point, and the families are not getting consistent quality assurance on this.

Also, one of the things that the sub goals states is about geographic access.  And most of the services are done in the home, of course, but the 2 centers of excellence for listening and spoken language are in Metro Atlanta.  So it is very difficult with some sort of tele program, which has started in Georgia, to get to all of these families.

Okay.  So goal 4, all children who are DHH with additional disabilities and their families have access to specialists who have the professional qualifications and specialized knowledge and skills to support and promote optimal developmental outcomes.  We are moving forward on this issue.  The primary service model provides for a team to work on all the care related to the child, and actually I have a good story.  My son, when he was born in 2013, we went through the intake program, and really at the time the county that we are in did not provide any type of deaf and hard‑of‑hearing service for kids who were unilateral.  They did allow for the Ski Hi program, which is state‑wide, to provide that service, but nothing from our Part C.

So we saw that as a barrier.  What we were able to do with my son was look at some of the other things that might have been going on with him in his case, it was toward a collaborations list.  We indicated that as experienced parents, that we felt that that was potentially related to his deafness, and could affect his overall development later, so he is qualified on physical therapy for a Part C services.  And then we added the speech and language goals that we wanted for him.  So there are ways to do it, but not standard for unilateral kids.

So additional ones are being looked at.  We are working on sharing information, the data systems are starting to pull together.  We recently, one example of that, was that for the 100 babies program and hopefully moving forward, I think ‑‑ but the identifier for babies was that goes from birth to 21.  That goes all the way through ‑‑ DTID.  I think the plan is have to go through education.  But 100 babies now are babies.  But eventually what we are hoping is assigning a number at the beginning to carry them through the system, and linked to education and public health data.  So that's a big change.

Okay.  Goal 5, children who are DHH and their families from culturally diverse backgrounds, and/or from non‑English speaking homes have access to culturally competent services with provision of the same quality and quantity of information given to families from the majority culture.  Okay.  So the sub goals here are by identifying them, ensuring that they have ‑‑ that they are participating and they are giving feedback, developing a professional in‑service training about cultural diversity and monitoring the developmental progress of children with this particular categorization.  We are doing really well in this, I think, in Georgia.  We have expanded our interpreter services a ton in the last few years.  All of the services now are provided in the home language.  That was just that something just came about because of Georgia Pathway.  Folks believed that in the beginning, when you are telling a family that their child might be deaf or hard‑of‑hearing, it is very important for language for that family, as much as possible, to use their home language.  And so that sort of philosophy in our state has made it very clear that the services that need to be provided, whether listening in spoken language or ASL, have that component of home language involved.  So that has had an effect on cultural diversity perspectives in our state.

Okay.  So goal 6.  All children who are DHH should have their progress monitored every 6 months from birth to 36 months of age through protocol that includes the use of standardized norm referenced developmental evaluations for language.  The modality of communication, social‑emotional, cognitive and fine and gross motor skills.  We are working on figuring out what these assessments should be are, particularly the educators in the Georgia Pathway programs are right now as we speak trying to figure out what those standardized assessments should be.  We do have a bit of a conflict, if the P5 should be used because right now it is considered what we are ‑‑ using as a standard, and it may not be the best thing to use to some of the professionals who are working on it.  So we are trying to figure out what the best one is. 
AUDIENCE MEMBER:  (off mic).
>>CARIANNE MUSE:  Yes.  That's happening more often now than it was.  I think 5 years ago we didn't see that at all, especially in listening and spoken language.  We are asking this family to kind of confirm to the language that the professionals knew.  I think that's changing, and the centers of excellence that are working on Early Intervention have really made an effort to hire more native speaking providers.  Of course, there is a large, diverse number of languages spoken in our state, we have a lot of babies and a lot of languages, but of course Spanish is still the number one.  So I think we are doing best with Spanish at this point.

Okay.  So goal 7, all children who are identified with a hearing loss of any degree, including those at the unilateral or slight hearing loss, auditory neural hearing loss, auditory neuropathy, and those are progressive or fluctuating hearing loss, receive appropriate monitoring and immediate followup, intervention services where appropriate.  In the JCIH committee, we had a lot of conversation about this, auditory neuropathy in particular.  And in the next document that's going to be a big focus in the audiology section.  Identify children with auditory neuropathy.  

However, the spirit of the document was do the best we can with what we have, and we understand right now, and for the most part this is changing in Georgia and we are doing a great job of trying to make sure we are all inclusive.  Everybody is worried about the unilateral kids that are not getting served, so everyone is working on how to make sure they can be in every county.  The Ski Hi program does serve all of them now as opposed to a few years ago.

And we do see that kids who are diagnosed with auditory neuropathy and progressive conditions are being served appropriately.  They are not denied services.

Yeah?
AUDIENCE MEMBER:  (off mic).
>>CARIANNE MUSE:  So the Ski Hi program is under 2 umbrellas.  It is really part of the Department of Education, structurally.  So there is collaboration and our Part C program participates in oversight.  But it is more of a Department of Education program.  So they are kind of separate.
AUDIENCE MEMBER:  (off mic).
>>CARIANNE MUSE:  Yes.  Absolutely.  What happens is you get usually the parent adviser from Ski Hi is one of the first contacts you have, and that's the first person, whoever is geographically assigned to you, to do that intake ‑‑
AUDIENCE MEMBER:  (off mic).
>>CARIANNE MUSE:  That's true.  They are not but are.  So everyone pretty much meets them right away.  It is statewide, it is from the State Department of Education, so it is standard across all counties.  The Baby Can't Wait Program, Part C program, is different county by county in our state.  So each county kind of decides how they are going to deal with unilateral kids, for instance, differently.
AUDIENCE MEMBER:  (off mic).
>>CARIANNE MUSE:  I would have to defer to our EHDI coordinator on exactly how that deferral process works.
>>  So once we get the referral of the diagnosis of permanent hearing loss, we refer to both agencies, we refer to Part C as well as the Department of Education to provide those different services.  Does that answer your question?
>>CARIANNE MUSE:  Thanks.  Yeah.  So we do  it differently than ‑‑ I want to make sure I don't get feedback from this.  But we do do it differently than the sort of recommended and a lot of the discussion in JCIH is centered around places that have done this well for a really long time and that's why the standards are kind of strict in some ways.  Like saying you have to divide the parent adviser from the intake services and have that be a separate service coordination function was something that Colorado has done really, really well, and Colorado came up a lot in our discussion in terms of how that system works.  And, you know, I think there are rates of loss to follow‑up, kind of demonstrate how well that they have always done with that.

So I think, you know, we have some decisions to make in terms of role identification, if we are going to look at this document as a guideline for how we are going to change things in Georgia.

So this slide, something happened to this.  I apologize.  Families will be active in the implementation (audio skipping) and I know it happened because I combined them.  There are 2 goals on families.  One is that they are active participants in the development and implementation of EHDI systems.  The second one is that families will have access to other families who have children who are DHH.  This is really about making sure that families are actively participating in 2 very specific ways in the system.  As part of system design, and then also as support for other families.  And we are getting there.  We have a growing number of families that are engaging in Georgia Pathway, and we think that's really important.  Also, our Guide‑By‑Your‑Side program has just started in Georgia and we have 5 new guides.  

Raise your hand if you are a Georgia guide.

And they are just getting started up.  But this is a big change in the last couple of years.  When we assessed this in 2013 with the parents, we were still working toward trying to get that program funded and part of the system.  We heard at the March 6th meeting from the parent table that in Georgia Pathway the parents still don't feel like they are completely integrated into the system creation, system design piece.  So that is something that we want to make sure we work on with both Hands & Voices and Georgia Pathway.  Meaningful contribution is very important, not just tokenism.  We wouldn't want to see that with parents.  

So that was parents and families.  This is really about individuals who are deaf or hard‑of‑hearing.  So same kinds of goals for them, that they are participants in designing the system.  They are part of mentorship and guidance.  And again, this is ‑‑ we are starting to do really, really well with this.  Our deaf mentor program expanded quite a bit.  We still feel like there could be a larger diversity of adults who are DHH integrated into the system and provided as mentors and support people so that we represent all cultures, all modalities, all hearing technology or no hearing technology so that our children and our families can see paths for themselves very clearly and that is reflective of what they may or may not be choosing.

And goal 12, as best practices are increasingly identified and implemented, all children who are DHH and their families will be ensured of fidelity and the implementation of the intervention they receive.  So why did JCIH write this goal?  The spirit of this goal from my understanding, through the meetings, is that they really wanted to make sure that they were not ‑‑ they were careful not to say we know exactly what to do.  Because there is so much that's still left out that hasn't been proven by research.  And we were very conscious of making sure that everything we did could be reviewed to go into this pediatrics document.  There is a lot of knowing, a lot of knowing enough and how to apply that, and it is going to change a lot from the time this document comes out and the next time it is revised.  

So we talked about this within the JCIH committee, and we really focused on the idea of fidelity so that if we know something is working, all families can expect that in all parts of that state.  So you can measure fidelity across the state.  And if we have more fidelity measures, it will actually help us get to the understanding of what works and doesn't work.

So fidelity in Georgia.  We are still working on this.  We do not have a satisfaction survey for parents, so we are not doing a needs assessment on how well ‑‑ any kind of assessment really on how they are feeling their services are measuring up to what is available, especially in the Metro area.  The Metro area versus rural area, I don't know that we can say that we are at a place where we can have fidelity.  We don't have the service provider opportunities that we do in the Metro area.

And that's ‑‑ the quality still is not measured uniformly across the state no matter what agency is providing that service.  It is measured within agencies, but it is not measured across the state on the same standards.

Okay.  So this is actually the fun part.  This is the part ‑‑ that was kind of the hard part.  This is the fun part.  This is actually the wide screen version of that initial logo of Georgia Pathway that I showed you, and it is a construction hat.  And it was given to us at one of the meetings, probably around 2013, actually.  I think it was 2012 because I was pregnant.  That's how I remember it.  But they gave us these at the end of the meeting and said, we are all construction workers on the road, we are all laying the bricks in front of the parents.  Brick, by brick, right before they step onto the brick sometimes.  And we really have to think about how we each have a role and responsibility, all of those players within that collaboration have a role and responsibility.  

And so we don't lay every single problem or issue we might have in a state on anyone agency or on our EHDI coordinator, we don't blame anyone, it is all about how are we a part of the solution.

And one of the ways that we have done that is through this path, that we have created and Riley is Terri Patterson's son.  So we used his name to make it more personal.  It started from birth to 21 and it shrunk now 0 to 3 based on how the timeline has gone.  We now are focused on prenatal education all the way through 3 years old.  And so everything we do now is about construction, how are we part of constructing, how can we go back and think of the next thing that we can build in our little part of the world to make this path more smooth for families.

The program that I love, this is our language nutrition program.  So one of the things that we agreed on was that we know that kids who need to ‑‑ who are identified at birth with deafness or hard‑of‑hearing will have a struggle with obtaining language unless the families understand how language they need to put in in order to get language out.  So the push and pull theory, and Carol Flexor (sp) was talking about, 30 million words, closing that gap of 30 million words by the time the children are 5 really resonated with us.

So what has been happening is how do we do that?  How do we make sure that children are understanding how important language is and how families are really using language from birth.  And we settled on this home language concept and said, as part of the larger reading initiative we want to make sure that families know before the baby is born and in the birthing hospital and when they take the baby home that they should be pushing in language.  And this is really for all babies in Georgia, not just babies who may or may not be deaf or hard‑of‑hearing, but teaching parents about home language.  

Right now we have a video program that goes to clinics, and that helps low income families kind of see the importance of talking to their baby.  And then the next phase is looking at trying to change professional development for the medical professionals that are involved in prenatal and postnatal services so they can model what it is like to push in language for a baby.

Here are some other big successes that touched along the way that I wanted to mention.  The biggest one is, of course, that Georgia Pathway, Riley's path construction that we have.  And the way that Christine really talks about how Colorado worked 25 years ago is that they made an effort to make sure that they were in relationship with each other.  And that's finally happened in Georgia.  People are face‑to‑face, they are on a first‑name basis, everyone is calling everyone, and we are all working together.

Some of the other things that have happened that have been really important is the number for tracking that I talked about, and implementing the Guide‑By‑Your‑Side program for family support, and tracking the 100 babies to look for gaps in the tracking of the first year.  And then the language and nutrition program for intervention.  We also had a presentation by Casey Foundation that talked about the public health access model, and it sort of oriented to thinking about how can we make sure that everything we are doing provides access for families.  Making things ‑‑ making people more aware, making things affordable, accessible are, available, accommodating and accepted.

So there you go.  And that's it.  So the rest of the time just open it up for questions, and we have lots of members in Georgia, so I don't want to be the only one answering them.

Terri, do you want to talk about Guide‑By‑Your‑Side a little bit?  Yeah.
>>  Again, I'm Terri Patterson, director of Georgia Hands & Voices currently and Guide‑By‑Your‑Side director as of officially May of 2014, and I will give you some updates on that as well as involved in a lot of the different coalitions as a parent at that level as well as working with chapter support for Hands & Voices headquarters.  

So a couple of things, going back to this at the Georgia level that have happened, as we talked through updates.  So we talk about the challenge of the primary service provider model.  It is challenging in the essence when this was really evolved in Georgia, gosh, this is back when Riley was about 4, my son is almost about 16, and the idea of when it works, it works great.  But what we found, if you have some holes and you can't fill the gaps of specific professional roles within that primary service provider model, you may have gaps in the service that it provides.  If you happen to, in our case, you maybe don't have SLPs or teachers of the deaf or any professional with a background in DHH within that team, and that's pure lack of professional capacity or training programs that provide professionals in the state, and you don't have that team that has DDH influence for family, who their only thing in the IFSP is communication and access issues, how do you really address that.

So how we as a state are trying to address that with the goals 3A, when we are talking about this ASL program, along with the ASL program, Georgia Hands & Voices has (audio skipping), how can we get some exposure to families at that level, and really the deaf mentor program and how can we better use that.  Our school, Atlanta School for the Deaf now, we are just learning has just started putting together a toddler program that addresses that for children.  But that's really been lacking.  We talk about families having full exposure, right?  And, you know, this beautiful spectrum, menu of services for these kids, but we educate parents, we empower the parents and talk about it, but if you don't have the programs available or the professionals to provide it, you are still lacking it.  You said, oh, you know what, this whole ASL beautiful immersion and access to the Deaf Culture, you want to explore that all the way up through all the other options that could include listening spoken language.  That's great, yeah, I want to do that.  Oh, well, let's see.  How do we find access to even a sign language class that's open for full family rather than a college level that mom has to take, you know, time off from work to go take a class, pay for the cost of it and go back and teach her family and not only that, but take care of all the appointments with the little one at the home that has audiologist and additional medical issues.  So that's what this has driven.
>>CARIANNE MUSE:  The whole idea that this document is emphasizing fluency really resonated with us.  When I hear things like 3 to 4 new signs a week, I get nervous.  Because what I love to see is that ability for parents as quickly as possible, it is hard, but as quickly as possible to get to the point where they can have conversations with their baby like a mother who is empowered with listening in spoken language option.  So let's make sure it is on equal ability to do conversation.  That is what's going to ‑‑ we are believers in that.  Having additional service in ASL from the beginning and the toddler age and really thinking through.  Because they are calling us all the time, how do we get ASL classes?  And we say, well, right now you have to pay for them yourself.  I mean, these are some things we can do to support you, but you kind of learn on your own, and is that enough.
>>  With the Guide‑By‑Your‑Side program, now we have worked towards that and building it and it is new in the state, it is addressing a lot of these challenges, I guess, for lack of a better way to describe it.  With the parent guides, because it is then a bigger network to involve parent leaders and to get further access beyond the chapter of Hands & Voices to get parents involved actively involved, again, not sitting in the back of the room, gathering information, but really that empowerment piece so they are actively participating and ‑‑ to what's happening in the state.

The expansion of moving into the deaf and hard‑of‑hearing Guide‑By‑Your‑Side parent guide or guide program too is something we are looking at, too, because what's another way that we can actively impact families at that level?  I'm trying to think, the fidelity piece really resonates with that, too.  Not having any type of parent survey.  That's something that's built into the Guide‑By‑Your‑Side program as well.  So how can we as a Hands & Voices program really affect that and start providing input back.  And this pathway program has really, like Carianne said, really united us across ages, birth through vocational rehab.  Really united us against, we are talking about literacy.  Talking about something we can all relate to.  We can all embrace our passion on a particular methodology or a passion on a particular service, and that's great.  Because we need that perspective.

But this has allowed us to get beyond that discussion and talk about we want literacy for all of our kids, right?  And we know we can get there in a lot of different models.  So how do we work together to get towards that.  So everything is starting to come together that way, and you are able to acknowledge the gaps, but we are really getting to an action oriented piece, I think.
>>CARIANNE MUSE:  I think the literacy thing, at first I don't get it, I don't understand how it is going to help, and started way out here.  Third grade reading, we are still working on getting screening systems right.  But bringing that goal out to third grade reading helped us get back to everyone in the whole community who was working on issues with DHH children, all said that is absolutely a goal we can all agree with.  How do we get there.  You have got to dial it all the way back to 0 to 3.  It is the only way.  And so it took several years for us to get there, we thought we can do it with reading strategies and kind of back into it.  And now it is like we have got people that normally wouldn't be thinking about hearing screening because they are focused on vocational rehab, and now they are thinking about hearing screening and that brings a lot of power to our tables, I think.
>>  The last thing I would like to say, you have got a document like this, you know, you can take it in a lot of different ways.  We have seen other presentations.  Candace presented yesterday, there is JCIH for this self‑assessment tool for programs.  So they are looking at it, how can we ensure the fidelity of the programs that are acting in this.  The CDC has an EHDI parent‑to‑parent subcommittee.  Janet and myself are the current co‑chairs of that subcommittee.  Once a month we get on the phone for an hour and our latest project has been taking this JCIH early recommendations for Early Intervention and saying how can we make this valuable information for the family.  And that doesn't mean going down the language and trying to reinterpret it, but we are working through, when you say one hour a month, I mean, we are about a year and a half into it now and we have probably got another year and a half to go, but that's something that anyone can participate on.  

And I say it is a parent‑to‑parent, Nancy, she is in the back.  Like Carianne has done.  And it did really evolve out of the discussions we had, this is something that parents need to know.  So it is kind of questions to ask, what you need to know, and really what does this goal even involve.  So I encourage anybody that's interested in that type of participation, send me an email, Terri at Hands&Voices.org.  We will make sure we get you on the email list.  And if you don't want to participate on a phone call, you can get the minutes and take a look at the document and see what kind of input because we take email input.

So there are a lot of different ways and you spend that time doing something like this, we need to use it, right?  I mean, we need to ‑‑ there is a lot of time, energy and thought put into that, so why aren't we making it accessible for the masses and especially parents.
>>CARIANNE MUSE:  The way that we looked at it was from a policy perspective.  Go to the body that's making the decisions on these things and tell them as where we think the gaps are as parents and where the recommendations should go and how we might change things.  The document that we submitted was 32 pages long.  It had a table, it had all of the sub goals, notes of what we think is going on in Georgia and the recommendations so if anyone wants that, let me know.  The CDC committee is more of a parent translation of that information from JCIH, the original JCIH supplement.

Any questions?  Yes?
AUDIENCE MEMBER:  (off mic).
>>CARIANNE MUSE:  Not quite.  Yeah.  There is not a lot of ‑‑ there is no free access to a class right now for parents.  Uh‑huh.
AUDIENCE MEMBER:  (off mic).
>>CARIANNE MUSE:  No.  I don't know.  I don't know the answer to that.  What I do know is that those conversations we were having about that goal were about the urgency of fluency and I don't know that that's necessarily something that we are doing across the board.  I think, you know, if I told ‑‑ if I told folks that my baby is wearing hearing aids and I'm working on 3 words a week, you know, I don't think people would think that would be acceptable.  And so it is very hard in the beginning to learn a new language, I think parents need to understand that they are going to need to climb that mountain as fast as possible, we need to do that and I don't know that we are doing that across the country anywhere.
AUDIENCE MEMBER:  (off mic).
>>CARIANNE MUSE:  Yeah.
AUDIENCE MEMBER:  (off mic).
>>CARIANNE MUSE:  Well, I come from a management consulting background, so ‑‑ and public health, I have a master's in public health and I went into management consulting.  And management consulting is not about having all the answers, it is about looking at what do we know that's best.  And it might be practice, and it might just be series of practices around the country or points of light that you can identify.  If you can't ‑‑ if you have to look at things from that perspective and say what can we do to compare based on what we have, we don't have a survey.  It will take years and really understand our state.  But what can we do if we just take pieces of it.  So that parent perspective being the major baseline measurement for this document struck me as a responsibility for parent groups to look at it, discuss it and figure out a way to influence and say, hey, we have got a scientific journal publishing this information from experts, and these people are in JCIH, I am just not worthy.  They are amazing and I'm still humbled to work with them.  They know what they are talking about.  If we could all have services in the way they imagine them we would be in great shape.
>>  To kind of continue what Nancy said, we were talking about just the specific piece of the ASL piece and I think Carianne touched on it, it really is about pushing to get the idea of it.  Because we do have, we have got a great deaf mentor program that helps facilitate languages, classes that are random, but as parents are saying that's not enough.  Because we might know about it, and you might hear about it through your network and this goes for any type of service or any kind of support.  But we know that it needs to be better.  We know that the ‑‑ if a family wants to embrace another language there needs to be full immersion and understanding and fluency and it needs to be provided by an instructor that's skilled in that and is instructing the family rather than just random because we are looking at it around literacy.  And so we know we can learn sign as a parent if we are not getting these classes and it is not ongoing and we can watch our child just explode in language in another language in their school setting or whatever and then come home and their language starts surpassing mom and dad's, right, and the people in their community.  So how do you increase literacy for those children when we can't keep up our literacy as the parents raising them.

So I think it is all looking at we know that we can find it and we can connect the parents, but what about those parents that aren't connected and we can't reach?  There is not that message yet, so how can we make it better and how can we provide support as parents.
>>CARIANNE MUSE:  And so the autism center did the presentation at the Atlanta Speech School, look, the spirit for ‑‑ supposed to train the family and you have an hour a week to do that.  And then the other 24 hours of service that that child needs when you walk out as the provider is done by the family.  And I feel like if baby has got to learn a language the parent doesn't know, that 24 hours is going to be very challenging.

Any more questions?

Okay.  Thank you.

(Applause)

(Session concluded).