IN Focus- April 2012 (REALTIME CAPTIONING IS PROVIDED IN ORDER TO FACILITATE COMMUNICATION ACCESSIBILITY AND MAY NOT BE A TOTALLY VERBATIM

RECORD OF THE PROCEEDINGS.)

>> Members of the deaf community have long debated whether deaf children should use medical devices to help them hear and be integrated into the hearing culture or whether they should be enrolled in schools that provide a more specialized education and promote the use of sign language. That debate has come to a head as the state begins pulling resources away from the Indiana School for the Deaf and transferring them to a new center it will develop for deaf and hard of hearing education. Well take a look at the potential benefits and costs of the move as we put deaf education In Focus. JASTREBSKI: Good evening. I'm Stan Jastrzebski. For years, the Indiana School for The Deaf, or ISD, was the sole state provider of counseling services for families with deaf and hard of hearing children. A new law changes that by moving those services out of the school and into an independent center. But as WTIU's Gretchen Frazee reports, the move has also stirred a debate about the message the state is sending to parents of deaf children. REPORTER: The author of the bill says it makes more sense to separate Indiana's deaf services from the school for the deaf, which primary teaches using sign language. Rep. Cindy Noe says the state created a problem for itself when it put outreach services under the watch of ISD. NOE: We had them joined at the hip through a common board with a provider, the deaf school. And that really is a conflict of interest when you have the overall conforming group having a special relationship with one of the providers. REPORTER: Some people who support the law have alleged the Indiana School for the deaf advocates too heavily for sign language and does not do enough to incorporate children into the hearing community. Josh Wade's son Nathan has a cochlear implant, a device that stimulates nerves in the inner ear, allowing deaf individuals to hear. Wade says when he went in for counseling ISD presented few alternatives to teaching Nathan sign language. He says he thinks the debate over the law centers around the fact that people are still getting used to new medical devices like cochlear implants. WADE: We have a new technology and there's starting to become an academic base for that technology and the choices need to be represented equally and I think that's all this was about.

REPORTER: But Amy Cornwell, a professor at Indiana University's Department of Speech And Hearing Sciences says sign language should not be abandoned. CORNWELL: You don't live with that implant on all the time. There is an implant but then there's a device that goes on the outside thats taken off. I mean, you take a bath, it's not on. You go swimming, it's not on. You're involved in sports, it's not on. All that time, they then have nothing that they can hear, so why not do something visually that they can see? REPORTER: Representative Noe says the process of creating the new center will be a long one, but she's still confident it was the right decision. NOE: I believe in our heart of hearts this is an opportunity to leave some bags at the door and to come in and have that focus of how can we best serve the parents of and the children who are deaf and hard of hearing. REPORTER: Stakeholders are meeting regularly to lay out the details of the transition and will later select the people who will head the center. JASTREBSKI: We're joined in studio tonight by three guests. They are: Greg Katter, the father of two children who attend the Indiana School For the Deaf. Naomi Horton, the Executive Director of Hear Indiana, an organization that advocates helping deaf children learn to hear and speak. And State Senator Pete Miller, who formerly worked with the Indiana Office of Management and Budget, which was charged in part, with implementing the new law. Thanks to the three of you for being here. I want to start by going to a piece of sound we collected from your daughter, Margaret, about her feeling about deaf education. MARGARET: I can't speak for everybody but most people don't care what kind of method you use to communicate. They just know they have a similar, not disability, but situation as you. That they can connect with you easier and that's how the deaf culture is for me. I feel that somebody else understands how I live and how I can't hear sometimes other than if I just join the hearing culture, they talk about stuff and I don't understand or I can't hear them. They understand but they can't connect with me the same way deaf culture can. JASTREBSKI So we just heard her say that she feels there's a disconnect between the hearing culture and deaf culture. Greg, we'll start with you and go down the panel. I want to start with a general question which is, is this a problem which has to be overcome or is it more a situation that needs to be adapted to? KATTER What my daughter was speaking that was that she is a split-placement child, she spends part of her time in the public school and part of the time at the school for the deaf and she was drawing her contrast between her experience at

the different schools. At the Indiana School for the Deaf where the language of instruction is American Sign Language which she is fluent in, it's a very natural environment, there are peers around her who going through the same experiences whereas, at the public school like any kid who's using assistive devices, whether it being a hearing aid or a cochlear implant or an FM system at the public schools, they all have the same difficulties where they don't hear everything. She was expressing the difficulties that even at the public school there are things she doesn't have access to the way she does at the Indiana school for the deaf. HORTON: I think your question is asking, were here at 2012 so is this something we need to adapt to this new technology and I think thats what we're seeing, the children that you saw in the video, that child getting his implant mapped or tuned up and programmed is one of the first group of the children who benefited from newborn hearing screening, and that law was passed in 1999 in the state of Indiana. Only the kids identified at birth, we are just now seeing the outcomes and they are fantastic. We are at the stage where parents have to make a choice and they see children doing really well with the new technology. And so yes, it's something we are adapting to. How do we best educate those children with the new technology thats available. JASTREBSKI: Pete, as you were going through the discussions with this new law, is this what you were trying to figure out, which kids fit better, in hearing culture deaf culture, one of the two? MILLER: No one size fits all. I want to make clear that the bill and the administration is not endorsing one approach over the other. The point is we were recognizing we at the state didn't do this very well. There were children falling through the cracks. The point is to acquire language skills regardless of whether thats English or American Sign Language When a child reaches first grade, they have to be able to communicate with that language to have a building block to acquire the knowledge they need to acquire at school. And we werent doing that very well. JASTREBSKI: We received a number of questions from our audience. KATTER: I would like to respond to what Pete was saying. One of the concerns of the opponents of the bill was the bill that was addressing a problem that had already been addressed. Nowhere in the bill or in the analysis did they discuss the relatively young statewide referral network for deaf and hard of hearing kids which just started working I think it was in August. Since that network was in place, the number of people that were identified and received services jumped dramatically so they had virtually full participation

through that program. So the question was, okay, we've solved that problem, why do we need a bill to do something we already have in place? MILLER: I would suggest that the network, a very good and well intentioned attempt to get through the system as is, was only as good as the system it was in and the bill was to change the system itself. The scope of that network is dealing with how services are initially provided. The scope of the center will be much larger than just that network. With monitoring and tracking it will deal with having more of a one-stop shop for all of these services. It's -- nothing against any of the individuals that have worked on this in the past, it's an organizational problem at the state and we're excited to put in place something that will reach all children, serve all children better, not just one or the other. JASTREBSKI: We'll address that more in a little bit. We've got a number of questions from our audience prior to tonight's show and I want to get to the first one. This is from Tammy Hossler who writes: How is the new center going to improve deaf education in public schools or mainstream schools where 80% of deaf and hard of hearing children attend? Pete, that sounds like something you were just saying. MILLER: The monitoring and tracking is not just from the point of identification to getting services it's Its from birth to the point of graduation from high school. If the students that are not achieving the goals in their individual education plans, the center will try to ring the alarm bell sooner. What happens currently is those kids struggle. If they don't have the skills to communicate and have language skills, you hear terrible stories, kids who are in third, fourth grade, in the public schools and so many of them are transferred to the school for the deaf and you're trying to do all these things at the same time instead of having a more, if you can address these problems earlier -- so I do see the focus of the center for public schools and ISD, as well. JASTREBSKI: We have another question that came in from our audience prior to tonight's program that I want to get to right now that kind of jumps off of this The second question from Marla: Has anyone in the state of Indiana conducted a statewide report on the math and reading outcomes of deaf all K-12 and hard of hearing students? I think a study of their outcomes should drive the outcome, not the other way. Naomi, I'm going to put that one to you, what is your thought on the amount of study that's been done? Has there been enough to decide how we should proceed in terms of deaf and hard of hearing education or does more gather need to be gathered before we

truly know where were headed. HORTON: There's two answers. One is it's always going to have to be a parent's decision. They can make any choice they want. They can go against the data. That's what I want to tell you before I tell you what the data has shown. If you look at the children in the mainstream, about half of them pass this step, a little better in math than reading. It's only half and it's not good for me and I don't think it's good enough for parents. One problem with mainstream education is we don't have track of all of those kids. If you look at the incidents of hearing loss, we should have three to 3,000 to 4,000 students in K-12, we currently have 2000 with an individualized program. Some of them are doing so well that they are dropped from the IP, so we don't have the scores in the Istep. I haven't looked at the most recent Istep scores from the Indiana School for the Deaf. My memory is from 2010. KATTER: I don't have more recent information. HORTON: In 2010 about a quarter were passing either math or English and I believe English was in the 15th percentile. Those are data that the parents look at. We're going to be able to finally track the children, how early did they get hearing aids, how early was intervention. We can look in the future and make better decisions. This is a whole different world. JASTREBSKI: Greg, you heard it's going to be a parent's choice. When you were faced how to educate your children who now attend ISD what were the sorts of things you had to find out in order to determine for yourself how best to educate them? KATTER: Before I answer that question, I want to comment a little bit on something said about the outcomes that the deaf school is achieving. One of the unique things to the writer's questions, has anybody studied the outcomes? Yes, there have been long-term studies on the education to the extent she was able to get the information. One of the key findings in the study is that of the students who were exposed to, who use American Sign Language as language of instruction from an early age who don't have additional difficulties, learning development, autism, the students exposed to ASL early do very, very well on the Istep scores. It's not 25 percent passing rate. The kids with only hearing loss, have 80, 90 percent passing rates. It's a small sample, but they have outstanding results.

My wife and I, how we made the choices, if a hard of hearing child was going to be born in the world, our family was probably the ideal place for them to be. My wife was a speech and language pathologist, in-law was an audiologist. We had a family newborn hearing screen in the hospital. So there's the data point before the law was in place. So we had hearing aids on her by the time she was eight months old which are not covered by insurance, the way implants are. We were aware of the deaf school and outcomes. Margaret has autoimmune disorder so the prognosis is some day she will be deaf. We don't know when. So we wanted to have a foundation that would allow her best to function in the world and we didn't -- implants, it was a relatively new technology at the time, we didn't think it was appropriate and her situation wasn't compatible. JASTREBSKI: Let me stop and ask you a question. There is concern from some people who wrote in that the new center is going to be biased toward one form of education, either ASL or mainstreaming kids with implants. Perhaps more quickly than is necessary. Is that a concern that you share that there's going to be a bias toward one type of education or another? KATTER: My concern isn't so much about the center. I've read a lot of information about the center and the black and white language on the paper is very much about parent choice, supporting parent choice. My concern is even, goes even back before that to the medical model where with the newborn hearing screen, which I think is a great think, identifying kids that need amplification or other intervention to get them auditory input, is a wonderful thing. The concern I have is the medical model that shuns American Sign Language has the effect of denying deaf and hard of hearing children regardless of choosing hearing aids, no amplification, implants. An IU professor mentioned implants don't work all the time, they're mapping. During that time that it's not working they can't learn, there isn't connection. Students in bilingual households, live with Spanish speaking parents, they learn two languages, there is no confusion, children grow up in Europe, learn six languages, there is no confusion. JASTREBSKI: Pete, where is the center in terms of its planning, construction, etc. right now? I mean, how close are you to being able to make the substantive decisions, how much parent interaction goes into how the children are educated? MILLER: The law was very specific to work with a variety of stakeholders. We have our first kickoff meeting tomorrow with that group, we look forward to getting their feedback answering some of these questions.

We've also hired some consultants and facilitators from out of state who have not been a part of this bill that will be completely independent and have expertise as well to help this group find common ground. Working backward, we have until October 1 to have the transition in place, employee, how much it will cost and all those questions. JASTREBSKI: I want to paraphrase another question, how to make sure that deaf professionals are major stakeholders in the decision-making process and not given a token position on the board but are the ones who are being asked, hey, how does this actually work. MILLER: I truly embrace that. Again, speaking from what it has been in the past, state government has been a silo of different agencies. You've got the department of health, social services, Department of Education, school for the deaf all playing a part here but the parent has to navigate through. Kids were falling through the cracks. This depended on which silo the parent ended up in as to the kind of information received. When you design, you want to design functionally across the agencies and have all the different players with the different levels of expertise playing a role in the center. How we do that, we're working on that. That is definitely the goal. JASTREBSKI: Naomi, Let me ask you, from the position of hear Indiana, are there other states whose models you think the state is following well or do you think that Indiana is charting its own course going down a path that might lead to answering some of the questions and answering the kind of tug of war between a couple of different sides? HORTON: I think we're leading the change here. I don't think anyone set it up like we did. There's a model in Washington state, I'm not sure exactly how it's structured funding-wise but I know you start in one group, and once you have chosen your methodology, you can either seek services from the Washington school for the defendant or their oral option program, still not a deal because there are some kids in between but that's one kind of model that has seemed to work for Washington. I think most people are looking at us. JASTREBSKI: We've talked a lot about how parental involvement is important. Dr. Bennett has mentioned, parents in Indiana are not involved enough in children's education, in many cases they don't know what the right thing to do is for the children. They don't have enough information to make the choice in an informed manner. Is that the case in deaf education?

Do parents understand enough to know what to give the children for the best possible outcome? HORTON: 95 percent of children who are deaf or hard of hearing are born to hearing parents. Depending on connectivity, income status, education levels, some have access to the best ENT in the state, some have access to the internet and some don't. That's what I was seeing when I was a provider. Some of them were fine about the implants but never visited the Indiana school for the deaf and never knew what choice they were making. We are giving the information to a level people can understand. Yeah, I think it's a problem. JASTREBSKI: Greg. KATTER: Indiana school for the deaf has the same spectrum of parent involvement that other schools have. It is a difficulty. A child regardless of the hearing situation that has a parent involved doing their homework is going to have a better situation. The state of Oklahoma, five or ten years ago, did implement a center for deaf and hard of hearing education similar to what we are proposing in Indiana. What Oklahoma is seeing is a decrease in the performance of the deaf and hard of hearing kids in schools because they are going to more of a medical oral only model instead of a bilingual sign language approach to help the child learn both a language of instruction, American Sign Language, as a foundation to learn English, spoken English, speech therapy and other options. JASTREBSKI: Pete, let me ask you, when the center is up and running, you mentioned an October 1st deadline, do you see the center as a competitor to IDS, in addition? MILLER: in addition. We talk about services, provided at ISD currently, the school for the deaf will continue to work with children pre-K. It's not a matter of making resources away. We're talking in that clip before about a conflict. If you are providing information and also a service provider, it's a bit of a conflict. All we are doing is separating the piece prior to the parent making the choice what direction to go. Those will be handled by the center and once that choice is made, the center will still be involved in terms of tracking and so forth. But then, the services in terms of training parents how to work with the children and so forth could be provided by a multitude of providers and the deaf school would be one of them. JASTREBSKI: Is that how you view it, Greg? KATTER: It's interesting you mentioned separating providers versus the people.

The vast majority of the individuals on the committee, particularly the elite planning committee, putting details of the center together, a lot of them, Ms. Horton included. HORTON: I'm not on it. KATTER: Thank you for the correction. A lot stand to benefit greatly, having more people and possibly funding to their organization. JASTREBSKI: Real quick, in the last 60 seconds or so, a quick thought, if you could change one thing about how this process moves going forward, what would it be? Greg, we'll start with you. KATTER: Greater involvement from people in the deaf community who have an interest in making sure their voices are heard. HORTON: I think we need to recognize oral deaf education was a mess, there were bad things that happened to deaf people. Deaf education today is no longer child abuse, these kids can listen, play piano, sing. We need to put that behind and move on. JASTREBSKI: Pete. MILLER: As a result of programs like this, we are raising the profile of this issue and making parents and families aware of the resources available and they don't feel like they're on their own. JASTREBSKI: My thanks for being here. Thanks to all of you who watched and listened. Please send us your questions for next month's program. INFOCUS@indiana.edu. You can also leave a comment or see portions of This show by visiting our websiteindianapublicmedia.org/infocus. Next month, we'll talk about money. Specifically, how much the state sends back to local governments and whether errors in determining those numbers have been corrected. Have a great night. CLOSED CAPTION PRODUCTIONS - www.ccproductions.com>> Production support is provided by... And by viewers like you -- thank you!