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EHDIA Parent’s Guide to the JCIH Supplement – D/HH Early Intervention

RecommendationsPacific Salon 3

Casey JuddMarch 14, 201611:05a-12:05p PT

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>> Check check check. Check check check. Check, check 1, 2. Check check check.

>> Testing. Are the interpreters here in the room? Okay, great. We're about to get started, but our PowerPoint just went off, so the TA was trying to fix it, I think. It was on. If it, if it doesn't come on in a minute, we'll just start. At least it's working up here. Oh, but, captioning. So, we could get started, except we can't, we don't have access to captioning now, so we're still holding on for a second. Is there anyone here using captioning today?

Good morning, everyone, can you hear me? So, today, you guys are in a session the JCIH Supplement. Your presenters today are Janet DesGeorges, Terri Patterson and Nancy Grosz Sager.

>> Good morning, we have an hour-long session, so we'll be talking about a topic that is near and dear to our hearts. We have Nancy Sager and I will be presenting today, which is a nice reflection of the committee that developed this project. Today we're going to be talking about A Parent's Guide to the JCIH Supplement. D/HH Early Intervention Recommendations. The PowerPoint is a little wordy. It's a left lane disadvantaged to not have it on the screen for you. For those who downloaded it

prior to coming and printed it out. Slept with it under your pillow last night in anticipation. Otherwise, if you're following along and it's not making sense, know that it may be a good idea to go back and download it when we're done today.

>> While the tech guys try to get the PowerPoint -- it might come on at some point.

>> Right. Good, so, I'm going to just start this morning talking about the project, the committee that worked on it, what our hopes and goals are for creating this. As a parent myself, throughout the years, being involved in EHDI systems development and sometimes being at tables where guidelines or processes are being established for the professionals who are, who are delivering the systems to families, I've often found it interesting that a lot of times, the very navigational tools in which professionals are using to get, to create an establishment system, parents are not aware of.

So, maybe one example in your state or territory is the parent road maps. We talk about the 1, 3, 6 system. Everybody has that tattooed on their arm, right? And often families don't have any idea on where they're at in the system. Over the years, people have developed parent road maps so parents can begin to identify where they're at in the process themselves. My full belief as a parent is that the more information you can give to a family, the more ownership they can take for that, for that particular process.

So, we'd like to thank all the -- so, first of all, I want to just share a little bit about who is the committee that, that has been working on this. The CDC many years ago, established subcommittee groups that typically have met by phone over the years. Terri Patterson and I are the cochairs of the Parent-to-Parent, the parent support committee for the CDC. We came together on a project a few years ago --

>> I think it was the what else checklist for audiologists. It was mentioned in the session I went to yesterday. They showed the checklist.

>> All right, very good. So, it's an interesting group. You're welcome to join it if you want. We have many professionals and parents that, and deaf and hard of hearing adults who participate in the development. It depends on which project we're working, I'll tell you one thing that's great about this committee and for Terri and I as cochairs of this committee. We work together, once a month for one hour and then we come back together the next month at the top of the hour and work really hard for that hour. And...I'm sure you've all been parts of committees before, where everybody comes to the committee and all you talk about is what you're going to do in subcommittee and

then you come back the next month to report out and nobody's done any of the work, right? Not in your states. I know you guys work very effectively, but for us, we have found that is a great working model that we're going to work hard together and move forward and not everybody joins every month, so some of products that this committee has put out over the years are questions to ask your audiologists, the what else checklist, which was an attempt at asking for audiologists to think about, besides, just the technical aspects of your work, what else are you going to be discussing with families during that, that session.

So, the way that the group comes up with our ideas of what we want to work on is through consensus. We just throw out all the different kinds of ideas, the good, the bad, we just keep processing through it and we begin to think, what, what is it that families need? What is it that the system needs? How can we address that?

So...in a very big attempt, I'd say, we began discussing the joint committee infant hearing supplemental guide to the joint committee guidelines on early intervention. If you haven't had the opportunity to look at that supplemental guide, there's 12 goals. The audience for the JCIH supplemental guidelines are professionals in the field. And we began to talk about just some global conversation among all of us and for those of us as parents, often, a common theme for families just starting out, from the very day they're being screened or in the audiologists, is do you have any questions for us today? We're like...no. And then sometimes professionals go, well that parent doesn't seem to be very engaged. We're like, we don't know what questions we're supposed to be asking. So, what if that was our attempt around...what if all of our questionnaires, like, questions to ask your audiologist, your geneticist, your early intervention provider. So, we began to ask ourselves a question. If there, for the first time, are national standards around what early intervention should look like, is there a way we can deliver that information to families so when they're going through early intervention, how do they know if they're getting good intervention? Honestly, I never knew that my first speech therapist for my daughter, whether -- I liked her, she was great, but it wasn't until I found a really competent speech therapist who knew, who specifically worked with deaf and hard of hearing kids was, was a better fit for our family. Or for families who are, you know, whatever, across the spectrum of services that they're getting.

So, what we did as an attempt, as a committee, hang on. Here's our presenters, we spent a lot of time putting our

pictures in.>> My picture was taken outside the hallway at a different

convention.>> Mine was taken seven years ago. I know I look a little

younger, but that's why I look that photo. Anyway...so, again, as I talked about the CDC parent subcommittee who have all worked hard on this. As you can see the outcomes for today and the outcomes for this tool, are to build self-awareness that leads to a greater ability to partner with families in order for them to participate successfully in evaluating their own early intervention services. We know the likelihood of this guide getting into every family's hands may not exactly be there. But we feel like it's a tool that those of us who are providing parent to parent support could work through with a family when they, when they're describing to us, maybe, sometimes it's just a gut feeling about their services or the quality of their services or, or their opportunity to meet other deaf and hard of hearing adults. All those components of what we know a standard for early intervention, this is an opportunity for us to, to work through them.

So, really, what we wanted to do was to take the supplemental guidelines and begin to not add to or take away from, but just begin to put into layman's terms, the conversation about quality early intervention, what that would look like. The beauty, I think, of this process, the committee has been very diverse in having the conversations about how, how we should say it to families.

So, again, you can see who the makeup of our group is. I'm going to move on. Also to help families measure the early intervention services they are receiving in a way the system has set a standard to. Here's the starting point. It's a very interesting publication, if you haven't read it, I think it's really worth your time and effort, and I think that one of the interesting things about this is for those of us who have been around a long time, often we found that systems thinkers, in this field, tend to perseverate on lost screening and follow-up. We know we have work in all of those areas, screening, identification, early intervention, but it's, it feels like if we move through this in a linear fashion, where we're just going to, we're going to just start having conversations about early intervention, once we get everything all set, we're never going to get to early intervention, right? I think the overall goal, I'm not on the JCIH, but in terms of, let's address early intervention and the system has been a great coup for all of us. Each goal is written as is in the JCIH position statement. You

can see what that committee had worked on and agreed on and came to consensus on.

When we first started this, we had categories, I think we had eight or nine categories we were going to try to address. After the first month, we thought, this is awesome, it's going to take us six years. We decided to simplify down into these three areas. Which is the goal and what this means to me. I'll talk later about doing this project as part of a CDC group and the technical assistance they're bringing into some of the parsing at the end of the draft for the language. And then the third area is things to think about as a parent. As it evolved, we got better and better at it, so our later goals seemed to be more succinct. We had sort of a, a good working motion where the earlier goals are, were a little bit more lengthy, we keep trying to simplify it. We labelled it things to think about as a parent. Pretty soon it started evolving into a discussion of, I have a right to expect, under this category. That's how we did it. The guide is still in draft form. In fact, this morning I was looking through my notes. There's a little note to committee, you'll see it when we get to it. We're still, almost, to the end, we were really hopeful we were going to be passing it out to you, today in its finalized form, but there's enough in here that you could actually go download this presentation and begin to utilize it as a conversation piece with parents.

But...we will, it will, hopefully, by this spring, in a few months, it will have gone through the approval process at CDC. They've been great in all of our projects, working with a nice, simplified layout. It will eventually be available, of course, at no cost on the CDC's website that you can utilize and print.

So, you can use these ideas and suggestions starting today.

Our challenges, we're not making, it was to not make the document too long or too large. Also, the idea of changing a complex systems document to one that is family-user-friendly. So, there were parts of this document that didn't apply as much to what we would want a parent to think about, as what we want the systems to think about. So, we of course, grew that as well.

And then, of course, the time constraints of the committee. As I mentioned, we're all in. Every, every month, for one hour. Sometimes we get outside ourselves like this is so great...you know, as the cochairs, Terri and I would go "we'll try to work on this outside of committee time." We found this is a beautifully-working committee for about one hour. Here's the goals.

And...you can just look at the list. These are the goals of the JCIH supplement to early intervention. We didn't create these. These are the, is the working approved document. What we decided to do today is to just pick some of the goals out and give as a demonstration to you, how this guide looks. We knew we probably couldn't get through it in the entire time, so, Nancy kind of picked out her favorites, I picked out a few that I wanted to look at and that's what we're going to do. We're going to go through each, we'll share with you some of the process.

Terri Patterson is here today to be our support team and tell us what a good job we did at the end. She's going to give input and has been a wonderful partner in this. So there, we are, those are the things we're going to cover. With no further adieu, Nancy will go ahead and start and take us through goal one.

>> Nancy: I'm a parent, but I'm not a parent of a child who is deaf or hard of hearing. I feel like it's a privilege that I've been allowed to participate on this committee. I feel like a minimal participant in it, but it's been a wonderful experience.

So...with that said, I think there is one member of the committee here, I think it's Beth, but she's not looking at the interpreter. I was going to introduce her to you, but she's not looking at us right now, we'll wait until later. The goal one says that all children who are deaf and hard of hearing and their families have access to timely and coordinated entry into early intervention programs supported by a data management system capable of tracking families and children from confirmation of hearing loss to enrollment into early intervention services. That's a very long sentence.

So...we wanted to break it down a little bit. So, we went on to this. This is what it means to a parent. We understand that hearing screening in newborns creates an opportunity, but it doesn't always guarantee the best possible outcomes. Early intervention is important. An audiologist should connect you with early intervention services. And a resource manual or guide should be available to you and there should be someone you can ask to explain the information to you.

This is what it means to a parent. The one thing I have found in different states, different definitions of that word, timely. And that was in the, did we talk about that? It's in the next one? Oh, good. What this means to be continuous. Services should be timely, your child to be able to enter into early intervention as soon as possible after hearing loss is confirmed. The hearing loss should be confirmed by six months of

age at the latest. If your child was identified later, as soon as possible. But as clearly as we can cut through defining timely, is as soon as possible. In California, it's once the IFST is written, timely means the next day, but if you're in a regional center service, timely means however long it takes to develop a contract with a vendor and get the services vendorized. So, timely means different things to different people. I don't know what it means in your state.

Coordinated, the professionals in your life should be communicating not just with you, but with each other. And...so, your audiologist and early start teacher and your SLP and whoever else is on that team should be talking to each other, they should know each other. We do find in some situations, they've never met. The parent goes to the SLP and the parent goes to the teacher and to the audiologist and they don't know each other. It's important that they work as a team and they're all talking to each other in order for that to happen, because there are HIPAA rules and FERPA rules. As a parent, you may be asked to sign release of information, so that those people with share information with each other. And supported through tracking. The goal of tracking is to ensure the child's early entry into intervention. I want to say, this is my own personal thing. These words tracking and surveillance are used a lot in the Early Hearing Detection and Intervention system. When I first heard it, I thought, isn't that something the FBI does? You know...they kind of don't set well with me. But they are words that are used frequently and you, as parent, will be hearing those words and what they mean in Early Hearing Detection and Intervention are not the same as what the FBI means. They're not going to be spying on you, just making sure that your family and your child get connected to early intervention services as soon as possible. And then following through the process.

So, things you have a right to expect as parents in this is that anyone involved with my family and child understands the timelines, whatever it is in your state and will meet all target dates. That your team will work to prevent enrollment delays. For example, and we have found practices that do the lay enrollment. If you've been asked to fill out a lengthy enrollment packet. Before they can start the process, you've been asked to go to some office and enroll your child before they can start the processes. Things that have been set up in some places to sort of delay enrollment. That shouldn't be happening. That your audiologist will connect you with early intervention in a timely manner.

So, we hope that all audiologists -- that word is a hard word for me to say. Audiologist, it's not rolling off my tongue. And so, I'm hoping I don't bungle it every single time I have to say it. We'll connect you with your early start system in a timely manner. We found that in California, the audiologists didn't know who to refer to. That's why we started a single point of entry, referral system in California, the audiologists said it's too hard to figure out.

Most states are local control states, who knows. My team of service providers, which are the service coordinator audiologists, therapists, deaf and hard of hearing specialists, et cetera, will provide the services my child needs or connecting with people again. And everyone who works with my child knows and talks to each other to improve the services for my child.

So, about resources, you received a copy of your state's family resource guide. And has it been explained to you? Questions to ask. Is it in your home language? It's easy for you to understand. Is it available in different languages and diverse formats? And does your family have access to all available resources and information? Including accurate, well-balanced, comprehensive information conveyed in an unbiassed manner. In California, we say in a non-judgment manner. We've had discussions about that word, unbiassed, but...anyway.

Okay, we picked out the ones we thought "this is the one we wanted to talk about" and I think I picked three in a row.

Goal three. All children who are deaf and hard of hearing from birth to 3 years of age and their families have EI providers who have professional qualifications and core knowledge and skills to optimize the child's development and well-being.

Intervention services to teach American Sign Language should be provided by professionals who have native or fluent skill in American Sign Language and are trained to teach parents and families and young children. I think this is a work in progress in almost every state. Sign language skills were added to the list of required services in the last reiteration of the IDEA and states still, I think, kept including California. We haven't really clarified what that service means or who is qualified to provide that service. I think this does a good job of that.

Intervention services to develop listening and spoken language, will be provided by professionals who have specialized skills and knowledge in the development of listening and spoken language skills. So, whether you've chosen listening and spoken language or sign language or both. You have a right to expect the services and that instruction that's being provided to you

and the family are provided by professionals who are fluent in sign language or really skilled in the provision of listening and spoken language development. The purpose of this goal is to ensure that families and children have qualified providers, regardless of the approach taken to develop communication.

They describe the key quality elements and providers [voice is fading]. I wasn't quite sure what I was talking about when I looked at that. You have the right to expect -- oh, that they have the qualifications to provide [indiscernible].

>> [Speaker off mic].>> Thank you -- I was reading, I'm going...I don't think

-- the service provider is coaching you on how to develop language skills and provide a language foundation to your child in the home. Part C service, your part C provider is with you for an hour or two a week. You are with that child 24 hours a day, seven days a week. Their goal is not to -- I mean, their job is not to come in and work with your child for an hour a week and wait. Their job is to come in for an hour a week, coach you in the skills that you need in order to continue to provide a language-rich environment in your home 24 hours a day, 7 days a week.

You know that you have access to resources for other communication choices if your provider is not qualified in those options.

The things that you can think about are that your intervention service provider has or is getting the training needed to be competent in working with your child and you can advocate for your provider to get additional required training.

That your service providers also addressing the social and cultural needs of your family related to deafness. You can think about the -- if you feel capable of carrying out the suggestions made during a home visit and incorporating them into your daily routine.

I think I, as a parent, would have a difficult time with this. While that provider's there. I'd be going, yeah, yeah, I can do that. They'd leave and I'd go, oh my gosh, I don't remember how to do that. And you've been provided with information about all your communication choices. Comprehensive information about your choices.

>> All right, I think when you think about all these goals, when you're working with families and they're describing where they're at or what part of the process they're in, it, this is not necessarily, probably a guide you'd go through the entire thing with a family. You can see in every single goal, there's

sort of a lot of complexity to each conversation. I mean from goal one, timely and coordinated to each aspect. But to be able to use, maybe, a particular goal and the goals in the JCH state the goal and they have recommendations. That's really where we drew from the areas in here, things to think about, or what I have a right to expect around that.

So, the next goal, I chose the first goal I chose to talk about today has to do with children who are deaf or hard of hearing and this is with the JCIH language. All children who are deaf or hard of hearing with additional disability and their families have access to specialists who have the professional qualifications and specialized knowledge and skills to support and promote optimal developmental outcomes.

The reason I chose that one today. At our Hands & Voices Leadership Conference last September, we had a presentation delivered by two of our parent leaders on this topic and when they first started, I've always known the statistic. We all know it, right? Up to 40% or maybe whatever you're going to say of families in our community have children who have kids with additional disabilities. It wasn't until our presenters asked those in the room in our family at Hands & Voices to stand up if you were one of those numbers that the, the number of families standing up around me overwhelmed me. When I began to think about are we really, truly addressing the needs and the words we're using and the conversations we're having with families who have kids that have things in addition to deafness. And so, that's why I chose this one today. I just want to speak out on that.

So, goal four, what there means to me. I think it's important for families to know that they're not alone in this. If they go to a meeting where there's parent to parent support being offered, they're looking around in the room and their community, they haven't been asked that question, they might perceive that they're the only one sitting there thinking to themselves "yeah, but...my child is different in this way." For us to acknowledge in the system that these families are part of who we are. So, what this means to me? Up to 40% of children who are deaf, hard of hearing have disabilities in addition to deafness. The purpose of this goal is to ensure that communication and language development are included and highlighted as part of the family services, regardless of whether the child has additional special needs. Why is this so important? Additional special needs often affect the child's ability to access and use language, especially when hearing loss is not the primary disability.

Things to think about. I have a right to expect my provider understands the potential impact of hearing loss on other areas of development. I have access to providers who work together as a team to ensure that all aspects of my child's needs are addressed. Appropriate providers are pulled in when needed to meet my child's outcomes. And that there's an expert on my team in the area of deafness.

I find over the years, having meeting families in this population, they're always kind of struggling with, at any given point, it's a moving target. What are the essential ingredients I need to be addressing now? That team needs to be fluid. At some points, you might be addressing one thing and at another time, another aspect of it, but in terms of the JCIH guidelines to ensure the integrity that those families are, can also focus on language and communication.

Some additional things to think about, here's a list. I think we're going to try to keep moving on so we can get through some more. Except I wanted to read some quick sentences from an article I brought up. This brought back to me the complexity of this journey for the families. Excuse some of the language, it might not be your preferential words, but you'll get the point. All issues aren't diagnosed at the same time, some issues impacting child's progress and learning may not yet be diagnosed, but this doesn't diminish their impact. The presence of hearing loss may make it more difficult to diagnosis other disabilities. Conversely, other conditions might mask the hearing loss, particularly if these other conditions are also associated with communication and language delays. Less severe challenges are often diagnosed later with attention being focused early on those that are more obvious.

So, I would say the complexity of the 12 goals and ensuring good intervention and all these things are only the layers and additions to this population that we, in the EHDI systems are serving need to be addressed. Nancy, the next one.

>> Nancy: Can I say something about the last goal? Okay...kids who have disabilities is that I often hear these conversations about a child who is deaf and has, maybe intellectual disabilities, and, and the team will start discussing about whether or not that child can benefit from language services. And, and it's so interesting to me because if the child were hearing and had intellectual disabilities, we would never have a conversation like that, we'd never talk about whether or not we should communicate with that child. But we do have that conversation when the child is deaf and has disabilities and I just wanted to say that.

So, this was my goal. All children who are deaf or hard of hearing should have their progress monitored every six months from birth to 36 months of age, through a protocol that includes the use of standardized, norm-referenced, developmental evaluations for language, spoken and/or sign, the modality of communication, social emotional, cognitive and fine and gross motor skills. I just wanted to say in California, we just passed a bill, thanks to some of our extremely motivated people in California, sent a bill, 210 which will implement this goal. If we implement it as it's written, it will implement goal six and I'm proud of California. The California Department of Education didn't do it. It was cosponsored in California by the California Coalition of Option Schools and the Lead K Group (?). Those two groups came together and sponsored this goal. I'm proud of the people that did it.

Goal six, what this means to you, this goal is meant to ensure that we're doing intervention and intervention is working. If they're assessing your child every six months in all five developmental, all five domains that the IDEA requires, your child should be making age-appropriate growth commensurate with his cognitive age and his intellectual abilities. And if that's not been the goal, then the IFSP team needs to look at what's happening in the early intervention services and does something need to be changed? Fixed? Added to the services being provided to your child or to you and your child.

You have a right to expect that your subjective and intuitive assessments of your child are always being valued in this process. You are the parent and you know your child better than any of these professionals who possible in and out of your life. If you say "my child blah blah blah" no matter what you say, you have a right to expect that that is being taken seriously by whatever professional is hearing what you have to say.

And that what you're doing is working for your child and your family and you're heading towards goals to help your child. You can question whether the expectations are appropriate or raise the bar. Good decisions are being made as a result of using assessment information and progress monitoring is used to prevent delays, not just correct them. And that there are no gaps.

Things to think about, let me see what I think is -- [voice is fading] -- okay...I think one that's really important is make sure that you're looking at the whole child. I heard a lot, we're not just looking at the ear. This is not just the language, but also the social, emotional progress, we're getting

a picture of the whole child and making sure that all areas, all domains of progress are being monitored.

The standard tools used are fair and take into consideration my child's communication, modalities and cultural differences and the state adopts recommended assessment tools. At this time, it's not happening in California. With SBT 10, it's not happening. When I asked early start teachers, just as a little survey, you know, what tools are you using to assess progress through the early start and pre-school service, I got a list of probably 75 different tools that are being used in different programs. Every single one of those early start providers will stand up and defend that tool, but it'll be interesting to see what comes out of the SBT 10 work group.

>> Janet: This committee had a great starting point. This JCIH document is really nice. We didn't have to spend a lot of time saying "we don't like how they wrote that." We didn't get into those types of discussions, we said, let's take what they said and how can we make it useable? So I really like goal nine. All families will have access to other families who have children who are deaf or hard of hearing and who are appropriately trained to provide culturally and linguistically sensitive support, mentorship and guidance. That's the goal in the JCIH. What this means to me as a parent, it's important that families have the chance to receive support from other families who have children who are deaf/hard of hearing and who have been there. Since hearing loss in children is not common, you may need help finding other families. It's important for you to know you're not alone. This, this actual bullet point is a result of a 30-minute conversation we had as a, as a group talking about how even in the beginning, families don't all, even necessarily understand the value and importance of connecting with other families. I know even one of our staff at headquarters said the first time she was offered family to family support, she said, why would I want to talk to other families? I need to speak to the experts. Of course, we all later realized who the true experts are.

Anyways...so we wanted to just, if we're going to be talking to families who are going through this, this was a statement we wanted to help them understand, even the value of it. What this means to me, this support may include opportunities to communicate in both formal and informal ways. And support models range from formalized programs in which trains families provide systematic support to other families and informal matching of families in a given community by professionals who know other families in a similar story. You can imagine being part of an organization that has high value on parent to parent support and there are elements of that support that are really enhanced when

we can provide training to parents who are going to be providing that support. We're real advocates of formalized programs. We also know in a world that professionals connect families with other families in a more informal way, so this is just a recognition of how family to family support happens.

We want families to think about this area. I have the right to expect that professionals who work with our families will help me connect with other parents through either formal or informal methods, share local and national parent organizations with me. If there is a formal system in my state, then the parents I'm receiving support from will be trained to work with families in an unbiassed and appropriate manner. Respect my family's culture and language. Be knowledgeable about resources available and partner with me in my journey in a nonjudgmental, non-directive manner.

If there is not a formal system in my state, I feel confident asking my professional team members to connect me with other parents and/or parent organizations. I know where to find supports online, I feel comfortable providing feedback to my providers about the quality of my interactions and I feel comfortable asking my providers to help me evaluate the information I received from informal methods of support.

And back to Nancy.>> Nancy: This is what I chose. It's very important.

They're all very important, I just want to say that. It was hard to pick. But...I wanted to focus on this one. All children who are deaf/hard of hearing and their families have access to support, mentorship and guidance from individuals who are deaf or hard of hearing. The importance of the role of the deaf mentor or the family.

We said that deaf and hard of hearing individuals bring a unique, diverse perspective. I'm killing you with reading this PowerPoint...but, that gives a family who is new to the journey opportunities to see that deaf and hard of hearing individuals can be successful and have different jobs and careers. I want to tell you a story about something that happened at one of our Hands & Voices camps that sort of drove this home to me. We had Julie Remsvario [phonetic] who was going to be a speaker at the camp. She's a deaf individual and she was late. We were at a camp outside of Sacramento where they discovered gold. The site of the first discovery of gold. And Julie was late and she came rushing in, she was all out of breath, she said "sorry I'm late." What had happened was that the night before her 16-year-old daughter who just got her driver's license had totaled Julie's car. Any of you who have teenagers, I hate to say this to any

that don't have teenagers, yet, it's sort of a right of passage when you're 16, you total a car, you know? I know. People who have little kids, they don't say that, but it sort of is.

So, Jessica was fine. She was not hurt, no one in the car was hurt, but the car was totaled. So, Julie didn't have a car. She had to ask her husband if she could use his car, but he had a golf date. He was going golfing and had to find a ride to the golf course so Julie could use the car.

You could see the whole group of families go "oh...her life is just as crazy as mine." You know? A perfectly normal life, just like mine. It was totally unplanned, but a moment where the parents saw that this deaf person has a life just like mine and it was a wonderful moment.

The very last one, deaf and hard of hearing individuals are able to answer questions about what your child's life might look like in the future. School, work, relationships, family/sibling dynamics and the fun stuff of life.

You have a right to expect professionals will connect with you individuals who are deaf and hard of hearing through formal and informal methods. Deaf mentor programs are great in the states. Share local and national organizations that offer interactions with deaf and hard of hearing individuals. If there is a formal system in your state, then the deaf and hard of hearing individuals, that you're receiving support from will be trained to work with families in an unbiassed and appropriate manner. Respect your family's culture and language and the communication decisions you've made for your child. Be knowledgeable about the resources available. And partner with you in your journey in a nonjudgmental manner.

If there's not a formal system in your state, you feel confident asking professionals to connect you with deaf and hard of hearing individuals and organizations. We hope that most of the professionals in your life know where to find that. You know where to find support online. Facebook and stuff like that. Pardon me? Hands & Voices, thank you.

I feel comfortable providing feedback to my providers about the quality of my interactions. And you feel comfortable asking providers to help you evaluate the information you've received from the mentors.

>> Janet: You'll notice, some of the language is the same. We decided to adopt from information about access to parent support, both formal and informal. So, we weren't repeating the same slides.

Finally, the final goal of the JCIH guidelines, as best practices are increasingly identified and implemented, all children who are deaf/hard of hearing in their families will be ensured of fidelity in the implementation of the intervention they receive.

Really, haven't we come a long way from the old days where you were trying to measure your early intervention and the consultations were like "do you like your provider?" Yeah, yeah, they're great, but this is such a rich, deep, complex piece of the puzzle that need to come together to ensure the integrity of early intervention. So, when we're thinking about that, that, the, the supplement, the early intervention was based on that evidence-based and best practices, as that continues, families have a right to that. So, what this means to me, we'll look at the definition of the word fidelity. What does this mean again? All children who are deaf/hard of hearing deserve the highest quality of services and resources, to ensure that the child can reach his or her full potential. My child's program or providers have made a commitment providing recommended services and implementing best practices in a transparent manner as outlined in these guidelines.

Can you imagine a parent really walking through the door and their early interventionist says "just looking over the guidelines, what's your college degree? What's your background?" You know, obviously we don't all think that or play out in that way. We don't put the power of this information knowledge and appearance. They have no way to really effectively measure that. [Voice is garbled]. Others in that area can advocate for the family as well.

Goal 12, I have the right to expect the program my child is enrolled in has provided me with written description of the elements of intervention. If we were in a room with 50 parents and say "has anybody in the intervention program provided you in writing, what they provide?" We probably wouldn't get a lot of hands raised. That's a good question for parents to ask. Say, do you have in writing what your intervention program offers?

My child's program will follow state laws that guide the required aspects of early intervention. This is where I said the draft comment to self as a committee. We often, we often came back to these. Some of these are complex. We're like, we better give some examples to families if we're going to talk -- what are we talking about? The required aspects of early intervention? An example of that would be natural environments. So...under the IDEA, natural environments are required. What, how would we describe or give an example of that to families who have children

who are deaf or hard of hearing where the, the natural environment for a deaf or hard of hearing children may not necessarily be the part C definition which is where a child would be if they didn't have other disabilities, natural environment. Natural environment for a deaf child might be surrounded by those, if that child's using American Sign Language, others in the room are communicating in American Sign Language. In the IDEA, there's a space for that. There's an indicator where an IFSP team could define that natural environment. At least it will help prompt these conversations. There are checks and balances to ensure that high quality providers are available. In other words, your intervention program should have some sort of assessment and measuring of the providers that have been hired to provide that intervention to you. And I will receive a copy of my rights as a parent and an explanation.

Additionally I have an opportunity to give input on what I've learned and how effective my services have been to my child's development. They've been able to vet, that input has been used to improve the services. The opportunity to participate actively in early intervention and my child's program uses current research to inform best practices.

So...anyway...there you go. So...we have the other, the, the full guide is like I said, it's been a pretty hefty project for us to take on and we're in the final parsing through of the draft. We continually go back to the JCH guidelines to say, did we add something or change in any way the integrity of the JCH guidelines? And we feel really confident that we, we've stayed true to purpose and our intent, which is to give the power to, to families in order to ensure the integrity of their services.

Here's some other projects the CDC has worked on. This is a catch phrase of trying to get people to use. If half the people, half the time, would use half the resources that have already been developed, our kids would be doing twice as good. I wish every family going, these are excellent products, created by a really nice group of people, over the years who have given a lot of time to this. Did I mention nice? Okay...we have a lot of fun, so if you'd like to be involved with us, we're almost done with this one and we'll be choosing our next project. We just found as a committee, rather than talking about what we can do to improve, we like the idea of concrete tasks, that's why we created all of these. These are really nice, nice documents that we can use, for instance, the decision guide to communication choices. That came out of the Ottawa decision guides in, for patients and we derived from that and created not just what are the choices that families have in communication, but how do you

go through the process of making a good decision? It's a beautiful four-page tool that families use.

So, those are our projects. Here's where you can find those projects. We encourage you today, you can go back and download this and begin to, if you're working with a family as an interventionist in parent to parent support or on a committee that's trying to address one of these, we, we recommend that you go back to the JCIH early intervention goals and please feel free to use this. I've often found that whenever I've been part of a committee that's created a simplified tool for parents, inevitably, I hope I don't offend anybody in the room. Somebody looks ad it and goes "this would be really good for doctors." There's some sort of you know, honestly, physicians, how busy they are in the world. If you hand them the EI guidelines, you might point out the goals and say this is the best practice standard for early intervention. Have a look at it. Feel free to use it. What we want is to get feedback where people say "I used this with a family." We often go out and test our tools before we finally use them as a committee. We'll go back out. When we were doing the what else checklist. We asked some audiologist to say, use this little checklist when you're with families to talk about these areas. We Troy do it in that way. We'd love to hear your feedback on both today's presentation and we're one minute over but we'll take one question or comment.

The question was, how will we know when they're done? Yes...there, you're welcome to, I don't know, they'll be up on -- one thing, they'll be there, but...I don't know how you'll know when they're done publically, besides a press release. And...commercials, no...if you're really interested in getting the date by, by our next call next month, we should probably have the next timeline written out. Again, I apologize. We had really hoped to be here today with the final, beautiful program, but we feel like we've made really good progress as a group, so, thanks again for your time today. Thank you, Nancy and Terri.[applause]

[Presentation concluded at 3:07 p.m. ET].

"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."