ROUGH EDITED COPYEHDI

BECKHAMD/HH ADULT INVOLVEMENT LEARNING COMMUNITY:

WHAT WE'VE LEARNED AND NEXT STEPS PRESENTERS: MANDY McCLELLAN, JODEE CRACE AND KAREN HOPKINS

3/10/153:00-3:30 P.M. ET

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(This text 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.)

>> MANDY McCLELLAN: Hi, everybody, I'm Mandy McClellan and first of all, thank you for staying on a Tuesday afternoon when I know you are all exhausted and tired. You've learned more than your brain can hold in a day and half. We're glad you stayed and are here for this session. I'm going to talk fast to go through a few slides because we've got a lot of information to cover in 30 minutes.In 2013, NCHAM decided -- that's the National Center for Hearing Assessment and Management. Was looking at the importance of deaf and hard of hearing adults being involved with families who had children who were deaf or hard of hearing. So we've done some research surveying and we formed a learning community, so that we could learn more. So we've been -- well, let me -- I'm getting ahead of myself, I'm sorry. Why is this important? Why is it important to have the involvement from the deaf and hard of hearing adults with the families? We want all families to have access to deaf and hard of hearing adults to teach, encourage, instruct, mentor, praise, influence, guide, inspire. We didn't -- the reason we have this long complicated title of deaf and hard of hearing adult involvement is because we knew "mentor" wasn't the term everybody used or "guide" or "role model" so we wanted it to be a broader look at how deaf and hard of hearing adults were involved with families.So we started this by coming up with a survey that we went to EHDI coordinators and others we knew were definitely involved or would know of people who were involved that had deaf mentor programs. So for just to simplify, I'm going to use "deaf mentor" or "deaf role model" so I don't have to say deaf and hard of hearing every time. I know it's long.

So we sent the survey out asking questions, do you have a program that hooks up families with deaf and hard of hearing adults with children who are deaf or hard of hearing. It was a brief survey that EHDI coordinators and others were asked to take. Then we moved on and did some follow-up questions. If they said "yes," we asked how were families referred, do you have a waiting list, what's your yearly budget? A longer follow-up intense survey that led to emails back and forth to try to get more info out of that.So what we did, after we gathered all this information is we invited programs to participate in the learning community. We wanted to keep it small, so that we could work closely together as a group. The programs -- most of the programs were well-established. We wanted them diverse in their model and types of service, and we asked them to commit for at least six months. We're going to talk more about that at the end, but we've met our six months. And these are the programs that are -- that were invited to participate in the learning community. So if you're part of one of these I would like you to stand. We've got several here. Center for deaf education in Indiana, the deaf mentor program there, Jodee, Hands and Voices virtual deaf hearing guide project. They're in another session. Illinois deaf mentor program, represents patients for choices from parents. The Minnesota deaf program Life Tracks. New Mexico School for the Deaf. Deaf mentor program. Texas Guide By Your Side, deaf and hard of hearing guide program. And Stacey Abrams is part as well, part of New Mexico when she was -- sorry to put you on the spot. The main educational center for the deaf and hard of hearing deaf mentor program.Jodee is wearing two hats here because the Utah deaf mentor program and the Sky High deaf mentor model program, so Jodee was with Indiana and Sky High and then the Wisconsin deaf mentor program. So these were the people ta we brought to the people to start this discussion about what programs, what was being done, what wasn't being done, what were our concerns? What did we want? So here we are in Indianapolis last February -- February 2014, we met together for a day and a half for a great meeting. It was a diverse group of people, lots of ideas shared, lots of mental exhaustion when it was over, but we had -- a lot of good ideas came out of it. Since that time, we've been meeting by conference call or by Zoom, a video conference communication. That seems to work best for us, so we've been doing that as the larger committee and subcommittees. When we were meeting together, knowing that there was such a diverse group with so many different opinions, we wanted to set the stage by saying, we all have the same overall goal that we wanted to keep in mind our shared passion of supporting families for children who are deaf or hard of hearing. That's ultimately what we all wanted. We may not have all agreed how we got there, but that's what we wanted to do. And any time -- there really wasn't any controversy or -- there really wasn't. But if there was, the plan was to look at that and go, here's our -- remember what we said. Here it is. But we didn't even have that.So after the in-person meeting, what some of the things that came out of that is that we want to establish standards and consistency for programs. Every deaf mentor or deaf role model program we saw is different. There's no one size fits all. So we wanted to establish some standards to say this is a good program. Not to say you must do your program one, two, three, like this, but just to have some standards of saying, these are some things you should be reaching for. And that goes back to raising the bar for deaf

mentor as a profession, and that includes lots of aspects that I think others will go into in a minute. And the other thing we wanted to do was act as a resource or clearinghouse for information, so that if a state or an organization wanted to establish a deaf mentor program, that they could come to our website and find resources for how to even get started. So I think Jodee is up next -- no, Karen. Karen Hopkins, to talk about it a little more.>> KAREN HOPKINS: Hello, everyone. As she said -- oh, goodness, I'm too short. Well, I don't know if you can see me. Let me come over here maybe. I'll just look back and forth from the screen here. So as she said, we spent two days together and just really had a lot of great discussion and tried to hone in on what it was we needed to discuss. So these were the areas that we came up with. We brainstormed and set subcommittees and just had a huge list of items that we did want to cover. This is what we established, our subcommittees and the groups that we would meet with frequently from month to month. Outside of that process we came together. What was it, quarterly?>> Every other month.>> KAREN HOPKINS: Every other month. We had small groups meeting monthly discussing these topics. These topics really looked at partnerships and who we could connect with. There was a group that worked on that. Then additionally when families choose to be involved, how can they go about doing that?Also, what is the role of social media within that?So many people use that today. So we wanted to include that in the process. Additionally, finances. Obviously we had to find funding. There was no money when we initially met, so we needed a subcommittee to focus on that. For all of the states. So looking at the needs and looking at the tools for those purposes.Looking at tools for evaluating each process for the deaf mentor programs. And then also getting virtual aspects involved as well. So we had subcommittees for each of the topics and had to look at who had interests and we divided it that way. And we really wanted people to be involved in these groups, those that were passionate for those topics and we brought them back to the main group for more discussion.So the next steps for the committees were we needed to make sure that we had our topics and tips set up on the website. We wanted to make sure those were there. We did get that accomplished. We also wanted tools for evaluations. We wanted that to be there as well. So you can get online. It is a lot of helpful information that is available to you. We recently met through video conferencing and we decided we really needed to create a curriculum that could be available to families, and what could be used for these programs. So looking at the curriculum from here on out.And with that I'll turn it over to Jodee.>> JODEE CRACE: At this time I would like to share with you the website. It is up and running. So it is a go-to location for you when you're trying to establish a program or grow a program, you can look at this website and garner more information and go from there.And, again, if you are just starting out, it's definitely a great place to go. It's a clearinghouse for all of the information about deaf mentoring.And the purpose of this website is to share resources. We're not going to guide you as to what program you should look at. We're just trying to put the resources out there.

They're Sky High available. There is Guide By Your Side. So it just gives you all of the resources that are out there so that you can really determine what is the best fit for your area, and it just really varies on the people that you work with and the families. The goal was also to assist current programs and it is a work in progress. We just started this last year and when we did initially begin, it was really more of a team building experience. Everyone has different experiences, different value systems, so getting us all in one place and agreeing what our primary goal was and that is to support families and how we can get there, how we can support those parents. And so what resources they need and making sure those are there and available, and then having that budget to do so. And, of course, we want to continue to grow in this area of public learning -- or professional learning community.So this is what the first page of the website looks like. And each of these areas do have links with more information. So once you click on that little area at the top, that will connect you on. So now we do have a video that was made by Tawny Holmes and it just talks about what the professional learning community is.You can go ahead and just view.>> Hello all parents, advocates, early intervention providers, audiologists, ASL specialists speech language, deaf community friends, Part C coordinators and the many others involved in the early intervention field.NCHAM, the National Center for Hearing Assessment and Management is the national data resource center for the implementation and improvement of comprehensive and effective Early Hearing Detection And Intervention systems. The website provides important resources. In addition, NCHAM co-organizes the National Early Hearing Detection annual meeting which began in 2002.NCHAM recently organized a deaf and hard of hearing involvement professional learning community. Its major purpose is to promote unbiased deaf or hard of hearing adult involvement programs to support all families regardless of the communication modality selected or hearing status. This group consists of experienced providers and administrators of programs traditionally offering such services. Currently about 15 states have this type of program in place.The general concept driving these programs is to offer families, especially families with limited or no experience with deaf or hard of hearing individuals the opportunity to get to know a deaf or hard of hearing adult who can offer their own life experiences. This may include teaching and showing families American Sign Language, sharing, blending cultures, explaining what life is like for a deaf or hard of hearing and sharing information on various assistive technology.They're able to get questions answered by a trained and sensitive professional. There are several national organizations that support the organizations provided to families by a deaf and hard of hearing adult program. They include the following.To identify potential learning community members, NCHAM surveyed all states in 2013 with support from those national organizations. Based on interviews with program leaders and their interest in collaboration, nine diverse and experienced programs were invited to the first professional learning community meeting held in Indianapolis in February of 2014.The programs included... Each program sent two representatives, many of whom were deaf or hard of hearing, to

this in-person meeting joined by several NCHAM staff members and national representatives. This meeting served to create the goals and objectives of the deaf and hard of hearing adult involvement professional learning community. As a direct result, we are working on developing a web page on the NCHAM website providing resources and information to help states establish or strengthen their own program to ensure the involvement of deaf and hard of hearing adults in the lives of family with deaf or hard of hearing infants and young children.The learning community is currently working on gathering evaluation tools, information on how to find possible funding sources, tips for how to start programs, and many other topics that will be helpful to programs wanting to build or enhance their deaf and hard of hearing adult involvement program.The members of the learning community look forward to working with families, community members, and early intervention professionals to make this possible everywhere in the United States. We encourage you to check our website for resources and more.>> So this is really a great tool that you can use to show your state if you're looking for funding. This is a great video that you could use. It is supported by NID and JCIH.>> So, again -- can everybody hear me okay?So, again, the professional learning community, which is really a fancy word for a task force or a group coming together. For those of you I'm looking out and seeing you signing, what does PCL meaning, it's a task force or working group, to clarify. So the next steps, the reason we came together is because a few years back a lot of people who were in deaf mentor programs and deaf mentors themselves came together during a national EHDI meeting and probably 50 or 60 of us sat together and realized there was no one central place that everybody could share ideas and meet annually to talk about what programs and what states were doing and NCHAM was extremely generous to say that they would fund this professional learning community for us, as well as ongoing meetings. So we're grateful to them for their support and NCHAM basically came back to the group and said, would you like to continue meeting? And we, without a hesitation said, yes, of course we would like to keep meeting. Those are next steps. We will continue to meet every three months. The entire group will meet every three months. A couple committees that have done the work, the funding tip community -- or committee, sorry, we've come up with all these different tips for states to look at that are posted on our websites. So if you are a state that already has a deaf mentor program or interested in creating a deaf mentor program, you'll be able to go to the website, click on a funding tip sheet. You'll see two or three pages of how to fund a deaf mentor program. You'll get some tips on where to look for funding, how other states fund their programs. You'll see links on that tip sheet. So that committee -- subcommittee, for example, is not functioning anymore. We have created another subcommittee on curriculum development. So we're looking at Sky High and other curriculums and that committee will be active in between the every three months that the entire committee will be meeting. So that's one of our next steps that we're going to be working on. We are doing ongoing web development that NCHAM is helping us with. So we'll be -- always come back to the website and see what we're posting. Always see the changes. You know, research surveys, parent quotes, feedback from parents, everybody tells us the deaf mentor programs and involvement from deaf and hard of hearing adults is

extremely beneficial to deaf and hard of hearing children. We know that. That's why the deaf mentor programs are out there. That's why deaf and hard of hearing adults are involved in deaf and hard of hearing children's lives. So that's why everybody wants to continue with this work group and that's why NCHAM has been so supportive of the work that we're doing.A follow-up survey is the next step. A survey was done, as Mandy said, a couple years ago. We're going to send out another survey soon. That's a next step as well. We're working on updating the survey soon to get that out to the states. We'll be compiling all the data to see how programs have changed. We'll look at maybe some of the curriculums that are used, some of the funding that might have changed, how the programs are looking and so forth.So those are some of our next steps.So what is going on in your state? Some of the things that Professional Learning Community has looked at, for example, are deaf mentors looked at as professionals? Are they, quote, just a deaf person who goes into the home? Or are they looked at as the professional level as a speech therapist, occupational therapist? Another professional? Are they writing goals just like the other professionals are? Are they looked at just the same level as other professionals or not. That may be something you should look at when you go back to your state. Are they getting into the home just as quickly as these other professionals? Or are all these other professionals getting to the home and then the deaf mentor is brought on board much later in the life of a deaf child?If you have a deaf mentor program, maybe when you get back to your state you want to pull all the stakeholders together to reevaluate your state program. Is the state involved? Is the EHDI program involved? I see some eyes kind of shifting.So maybe you should look at your program, see where funding could come from, talk to your EHDI coordinator. Are deaf and hard of hearing adults involved in the decision making in your state?Are they involved at the administrative level? And should they be?Yes, good answer.[chuckles]I'm nodding. I'm feeding you that answer. Yes.And if you don't have a deaf mentor program, how do you create one? Go to our website. There are lots of ideas on the website. And you don't have to reinvent the wheel. A lot of these ideas and a lot of this information is already on the website. Evaluation tools, outcome measure information and so forth.Learn from other programs. Feel free to ask -- your email address is on the website, right? Mandy's email address is on the website. Contact her and she'll get you in touch with us. Just a handful of programs are involved in the professional community, but there are many other programs out there that have gone through this process. You're not alone when you go through the process and we're more than happy -- I think all of us are willing to give out our email information to you. We're more than happy to help you there in the process and give you ideas how to create programs. We'll tell you what worked and how to get through the system. We'll tell you what hasn't worked. We'll tell you how to get stakeholders together, who are some of the important people to get around the table.

So I'd like to jump into the survey a little bit. There's some questions that we asked on the first survey -- how many here have a deaf mentor program right now? I should say it this way. How many do not have a deaf mentor program and want to start a deaf mentor program? You don't. What state are you from?PA. Who else? Montana. Texas does not. Montana and Texas does not. And Pennsylvania.[ speaker is off microphone ]>> Texas has a deaf involvement -- guide involvement program but not deaf mentor program. Nevada. Oh, but you gamble, though.[chuckles]Okay. So the first survey -- an Mandy helped me with this a little bit. Oh, good. Great.So we asked just basic information on the survey. The name of a contact person, if they're planning on creating a survey or not, the name of the program, how long the program has been functioning, the purpose of the program, job descriptions and duties of the deaf and hard of hearing individual. Now, some programs require that the deaf mentor has a degree. Some programs do not require a degree. The modality -- now, remember all deaf mentors do not need to teach ASL. Some deaf mentor programs have mentors that are oral. I hate using the word oral. Many are speaking, is that oral or not oral? We have a debate on what to label people. The language modality used when working with families. Qualifications when serving providers for the program. The curriculum used. Many use Sky High but there are many other curriculums out there. The types of families served. How many families were served by the program last year? How frequently the families are served. The budget for the program, and other information about the program, just general information that we would be asking. And those are the general questions that we ask. That's kind of a quick summary of the survey we're going to send out. Is there anything else that we missed?Yeah?Hold on one second so we can get a voicer.I'm sorry about that. I don't know if you mentioned it or not, but my question has to do with the administration on the state level. Are they involved? Because we don't have that for sure.>> So the additional would be are there administrators on the state level involved in the deaf mentor program?You need the microphone?>> Two quick questions. I don't remember, you went through the list so quickly, but how -- typically how early in the process are the use of deaf adults identified as a service for the family? That would be good to know. And then also is it -- you know, is it kind of an opt-in or opt-out kind of program? Is it something that is, you know, automatic and then the family opts out or something they have to ask for?>> Yeah, that's something we talked about at the in-person meeting. Wouldn't it be wonderful if it was an opt-out system instead of opt-in, which means that every child who is born with a hearing loss automatically had a deaf mentor show up at the door to meet the family.Other comments?Okay, well, the survey will be going out soon to all deaf mentor programs and then hopefully next year we'll have the results for everyone. And you'll see what your

comments and results of all the state programs have.Oops, yes?[ speaker is off microphone ]>> Do you know all the programs that have already been established, you're aware of all of them?>> Unless something has happened recently that we don't know about. And as long as they completed the survey. If the survey was sent out to the EHDI program coordinator or the state and somebody decided to ignore all the emails, then we don't know about it. Hopefully the email was opened and read and responded to.Yeah?[ speaker is off microphone ]>> I just moved to D.C. from Delaware and I've had two different experiences now, being in these different states, really quite different. In Delaware we tried to establish a deaf mentor program. And we had some difficulties in that the EHDI committee had concerns in terms of referring deaf children. I mean, when a child was identified they would get referred to a Guide By Your Side who then would refer to us because of the HIPAA rules and the policies and so forth, so there was some confusion about how that could happen effectively and it became very confusing as to if we have this deaf mentor program, how do we find the children that we are -- you know, the families. So that's one issue. And we sort of ended up dealing with it by having the Guide By Your Side introduce the topic and if the families wanted they would follow through with us, but often families didn't respond. Now, moving to D.C. we don't have a program yet, but there are people ready, you know, that we've got staff in place but that we need to get licensed to start a program. But I guess I had that question about referral. Who refers to whom and how do those connections get made? That would be my question. How do those connections get made initially to the program?>> You have two options when it comes to HIPAA and referrals and one thing we've done in our state is get all of the stakeholders in one room and what we're doing right now because we're revamping our program is require the deaf mentors to do outreach to the CFCs, the Child and Family Connections offices, so when the child is identified, the bureau of early intervention, then they know about you and refer the child or family to you. But we're now going to make it a requirement that the deaf mentor does the outreach and the education. So they can put a name with the face and then connect the family to the deaf mentor.Because we did have that problem. So we're going to implement that the next time -- the next go-round.We have -- time's up. Okay. We'll stick around for a minute if anybody has questions. Thank you for your time.>> Beth, over there, raise your hand. She's the one that helped start the first go-round actually of -- when we gathered the first time around at the national EHDI conference a couple years ago and also helped with the survey that first time around, so put your hand up in the air, because you came in late. We just wanted to introduce you.