ROUGH EDITED COPY

EDHI
Malpensa ‑ 2:50 pm CST Breakout Session
March 4, 2019

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Tales from the Trenches: Real Life Educational Advocacy Stories
with Tabitha Belhorn and Janel Frost
2:50 PM CST 

   >> CAPTIONER: I hear you. 
   >> This is tails from the trenches; real life educational advocacy stories. I'll be your moderator. Please don't forget the evaluations. 
   >> Hello, hello. Welcome everyone. We have a room full of people. Janel and I were just talking before, out in the hallway before we came in. And so we've got our passion moving, so, feeling energized. How about you? Passion going? Okay. I am ‑‑ do you want to flip? Do you want to do the slide? 
   >> TABITHA BELHORN: It didn't work. 
   >> JANEL FROST: Huh oh. Is it not working? You broke it again. It won't advance. 
   >> TABITHA BELHORN: It won't advance. 
   >> The slides? 
   >> JANEL FROST: Correct. 
   >> It's going to cost you this time. 
   >> TABITHA BELHORN: We'll go ahead ‑‑ Janel, how about we ‑‑ is it working? 
   >> JANEL FROST: It's working. 
   >> TABITHA BELHORN: Was it Janel's false? 
   >> JANEL FROST: Always. Always my fault. 
   >> TABITHA BELHORN: So Janel and I decided we wanted to share stories with you from other parents and share with you the ups and the downs that parents are experiencing as they're advocating for their children, the good stories, the bad stories, and even the ugly. So, we do ‑‑ Janel is from Michigan Hands & Voices, and I'm from Ohio Hands & Voices. Together we do webinars for our states. We do brief lunch and learns that we offer at noon like once a month on various advocacy topics. We record those and post those on to YouTube for families to watch and review later. Those lunch and learns were going really well, but they were missing the element of personal story because they were so short. So, we decided to kind of add in our series that we call tales from the trenches. The other benefit of that is we were inviting other parents to share their stories. So, it wasn't Janel and I alone speaking and leading, because we wanted other parents up learning and leading as well. 
    So, did I even tell you? My name is Tabi Belhorn. I work at the Ohio school for the deaf as the parent mentor there, and a lot of my time is devoted to the statewide services, the evaluation team.  So we bring families in for their three‑year evaluations, and I am there to help parents through that process. Janel, I'll let you talk about yourself? 
   >> JANEL FROST: Can you see me here? I know I'm short. Tabi did introduce me. I am first and foremost the parent of a child who is Deaf plus. My son is 17 years old, and I'm getting ready for a whole new process of the journey here, but I am the executive director for Michigan Hands & Voices and also the ASTRA coordinator. And a little bit about ASTRA, it is an advocacy and support and training program for our parents and for the professionals that work with our children. Our whole approach is the team approach to help the families be able to build this team around their child with the professionals. So, we always look at it as a collaborative kind of type of group. 
   >> TABITHA BELHORN: I did fail to mention that I also am a parent, and my daughter is 17 as well, and so we are also entering that journey, which is frightening. Every day is a new day. We are going to talk about today, special education laws that you can use when advocating. We are going to look at different advocacy techniques. And we're going to talk about the students evaluation. So, an initial or three‑year evaluation, what that looks like. So, three laws, I really am going to kind of fly through these laws.  So if you want to know nor about specific education law, you should come to a full ASTRA workshop coming to a state near you soon, I'm sure. And it is packed full of information, but there are take‑aways and key important laws that can apply to students in schools. 
    So the first one is IDEA, the individuals with disabilities act. The second one is section 504, and then the Americans with disabilities act as well. So, I'm going to talk briefly about each one. IDEA is what we typically refer to as ‑‑ it is the special education law. In order to qualify for services, you have to have one of 13 qualifying disabilities that adversely affects your education, your students' education. 
    So what comes out of IDEA is what we all know of as the IEP, so the individual education program. And we have program bolded here, because I can't tell you the number of times that we've been to IEP meeting as advocates or working with families where they call it an individual education plan. While those words may not seem that different, to us as advocates, they have an entirely different meaning. When I hear parents or professionals say "plan," what that makes me think of is, well, we have these ideas and we're going to try to do this for the child. Well, federal law actually says program. A program says, "we have specially designed instruction for this child. It's a program meeting this child's individual needs that you MUST follow." So those words are different to me. The IEP is an enforceable contract. If it's written in the IEP, it has to be provided. Likewise, if it's not written in the IEP, it doesn't have to be provided. So, if a parent wants something, make sure it's in the IEP, and then it has to be provided. Tip number one. 
   >> JANEL FROST: And also, if it didn't get provided or wasn't accepted at that point in time, also to ask for that written notice so it's in the IEP contract right there that that was noted. That we asked for this. But it didn't ‑‑ you know, they didn't choose this because of this data. But the reason for that is you have got documentation that you requested something that wasn't accepted as part of the program at the time, but it's there that you requested it. And then sometimes you can say asked to be revisited in the next year. And there is, you know, proof there that they now have something to say we need to look at this in a year. 
   >> TABITHA BELHORN: Absolutely. So, tip number two? Prior written notice. So, part of IDEA is the special considerations. This is my favorite clause in IDEA. Because I feel like as an advocate, I can bring almost every need that a Deaf or hard of hearing child needs back to this specific considerations. So, there are this specific consideration is for a student who is deaf or hard of hearing. And so, it says we need to look at ‑‑ we need to consider the language of that child, their communication needs. Language and communication are different; they're not the same. We need to look at needs for direct instruction, with their instructors, with their peers, professional personnel ‑‑ so speech language pathologists, PT, OT, in that child's language. We need to consider the child's academic level? Do we have a child who is behind and needs to work to close the gap? Do we have a child who is gifted and needs extra services as well? There are a full range of needs including opportunities for instruction. So, the full range of needs also means before school, after school in the lunchroom, in the one‑on‑one therapy room, on the playground. Did I say on the bus? On the bus. Did we talk about that? What about also emergency needs in school? That's a full range as well. All right. I've already ‑‑ okay. I'm going to keep going. 
    So section 504 of the rehabilitation act of 1973 is a civil rights law. It also is an education law, but mostly it's a civil rights law. So, if parents have a child on a 504 plan, notice this is a plan, it's not a program. 504 is about providing students with accommodations to access the curriculum the same as their typical peers are. So, it's not specially designed instruction. It's more about accommodations and access. 
    And the definition to qualify as a disability is different than IDEA. You do not have to show adverse effect. We see a lot of students who might have diabetes who would ‑‑ could get a 504 plan. ADD, if it's not impacting education, they could have a 504 plan for that as well. So, the difference here to know is it's civil rights law, and it's a 504 plan. 
    So, and Americans With Disabilities Act is another civil rights law. There are titles I through V. We are going to look mostly as applicable to education is title II in regards to effective communication. And this is kind of a newer advocacy tool that we are using, and you can find information on Hands & Voices website about effective communication, and there's a policy letter out that says students who ‑‑ deaf and hard of hearing students should have communication as effective as their hearing peers. In our state, we do not have a skill level assessment or test for interpreters. They just have to be licensed. We may have students who have beautiful ASL being placed with a recently graduated interpreting student in an AP mathematics class. That's not going to work. That gives the ability to tailor that to the individual student's communication needs as well. If you have an older student, does that student think it's as effective? They will be able to tell you that as they're getting older. 
    ADA applies ‑‑ it's a public law. So, it applies everywhere. And this is just kind of a snapshot of how these three laws work together. So, ADA as a public law applies everywhere. So, it's a big umbrella. And then 504 is still a public law, but it's educational‑focused, so it's going to be applied only in schools. And then IDEA is a special education law, so it's a bit more restrictive. It's smaller. And only applies in schools. So, you can't take that to the movie theater and apply that. But ADA would apply at the movie theater or the Broadway across America or all of these public places. 
   >> JANEL FROST: All right. So, there's a couple of different advocacy approaches, and we're going to talk about them now. Every state has a list of parents' rights. This is the handbook we get at the first IEP meeting. It's about this thick in Michigan. We know it's 58 pages. We just looked at this. It's 30‑some pages in Ohio. So, each state has a little bit different amount of pages it is, but the rules should all apply to the federal guidelines, and then specific to your state. So, this particular procedural hand‑out is what all parents should be going to and looking over. I know it's difficult because there are a lot of pages. But if you have a problem and you're trying to figure it out, you can look in that handbook, and it will tell you the process of how to get that done. Easier said than done. Most of us don't have the time or energy to do that. So, we do help parents to be able to do that as well. And really over the years, keep taking them back to that handbook to help them. Because that's the rights. That's their rights right after the table of what they can get done within the IEP process. 
    We also do look and help parents with letter‑writing. And Tabi is going to kind of go over that in detail. We work with parents with making a parent report. And this report helps them from the very beginning of their journey with their child, and hopefully changes over to a student report. So, eventually, the student is in charge and they're coming to the table and being able to present to their team. 
    We also are going to discuss a communication plan. These are some of the approaches we will discuss today and go over. 
   >> TABITHA BELHORN: We're going to talk about letter‑writing. As an introvert, I can't always think off the cuff at an IEP meeting. Being able to write a letter afterwards allows my to articulate my thoughts a lot clearer for everybody. The reasons we encourage parents to write a letter is so we can build and develop relationships with the whole IEP team. This can be a great way to bring everybody together. It's a way to express all of your thoughts and concerns without being interrupted. Have you ever felt like you were interrupted in an IEP meeting? Somebody jumping in when you as a parent, you're like I just ‑‑ no, no, no! It allows us to be able to assess the situation as well. So, what kind of response are we getting in that letter? And, my favorite is because it's documentation. So, I save all my e‑mails; do you? We don't delete those. If I have a conversation in the parking lot, while I might remember it, I can't prove that that conversation happened. So, if I e‑mail a follow‑up from that conversation and a teacher responds and says yeah, that's what I remember, too. Now I have documentation of that conversation. 
    So what should you include in a letter? The date, the date that you're writing the letter.  So this would be an e‑mail or a paper letter. And the date of the particular incident or conversation that you want to talk about. And you really want to explain the situation or your concern by answering who, what, where, when, how, or why. If you have ever heard of Pete Wright, he talks about writing a letter to a stranger, being able to hand this letter to anyone and they would understand. If you have a specific request, be sure to include that in the letter. And not only a request, but a follow‑up and a deadline. I would like to hear back from you by this date, and we need to have a meeting on this date, whatever that is. You want to include facts, data, details. And I put here, remove most emotion. I think there's ‑‑ there is a time and place for us to have our emotions in there. And you don't want to use that ‑‑ especially that anger. You want to make sure you get that anger out for sure. That won't be productive. But letters are great. You know, and I worked with a family who always ‑‑ she really wanted to advocate for her child. She tried to send e‑mails, and you could tell that the IEP team was getting frustrated and it was creating more angst. I have worked with this parent over and over, and this is a sample of an example of a letter that she would send very directly to the school. While it's not bad, it could evoke some emotion if you're the teacher. You might feel a little bit blamed. The follow‑up slide, we have a resource available for you. After years of working with her, getting letter‑writing down is hard. She changed her layout of the e‑mail. It used to be one paragraph. You couldn't read it or decipher it. She would send it to me. Hey, you know? Is this okay to send? Taking out the emotion. Putting in facts, data, and details. I love the fact that she's able to get the details in now. So, you'll be able to see ‑‑ please don't get side‑tracked by the actual story, because the story is heart‑breaking as well if you're reading that. Try to focus on her letter‑writing skills. Janel is going to talk about parent reports that she loves. 
   >> JANEL FROST: I know we only have a couple minutes. Know you will get resources to take home. So, a parent report. What is it? Really, it's just everything the parents want to discuss with the school that's given prior to meeting with the school. You can be creative and show off a little bit. I love it. But I am not this creative type of person. So, it doesn't have to be. Really in the end we just want to be able to give something to the IEP team, 504 plan team prior about your child. It really helps them prepare themselves, just like we hope that we get a draft IEP prior so we can prepare ourselves. 
    All right. So, what to include in it? You're going to include their strengths, challenges, goals for the year, plans for the future, notes, and then you're going to kind of ask for any accommodations, modifications that you really thought that your child might need. 
    All right. We have a little video about a mom who is talking about what it meant to use a parent report. 
    [ Video ]. 
   >> JANEL FROST: As you saw, the parent mentioned that writing the letter or the parent report helped her to ‑‑ helped the team ‑‑ they became more prepared. And we really want to empower the parents to have a seat at the table and to feel a part of the team. But the whole goal is to make it a student report. And the way we do that is that the parent report is really done with the child right from the very beginning. Their input is included in every aspect of the ‑‑ yes, their strengths, challenges, pictures, what they want to be when they grow up. And you know, there's just this evolution of the child eventually having their own, and the parent is in the background just helping them and supporting them in that process. 
   >> TABITHA BELHORN: The communication plan is another excellent advocacy tool that parents can use. And this particular plan that I'm referencing here ‑‑ is my mic on? It is, right? It's recently revised. Myself and my co‑author is back here in the room as well. And this plan is based on a lot of the other communication plans that you will probably see in our network. But when we revised it, we added in ADA law, so that effective communication piece, and you will find within the document words like "effective and meaningful" and "native language" and "direct communication." This is designed for IEP teams to complete together so everybody understands the communication needs of the child and communication access across their whole day, from the moment they get on that bus to the moment they get home at night. And then when they go back after school for a basketball game, all of that accessibility issue is included there. We don't have time to go through it, but the communication plan is an excellent tool to bring everybody together. 
   >> TABITHA BELHORN: I'm not going to read this quote to you, but the block family is an interesting family. This is a mom who was an early intervention provider, so she was a strong advocate for her child. He son had a really rare form of neuropathy, that when he was overheated, he would lose his hearing. It may come back immediately when he cooled down or it may take a couple days or a week. They never knew how long it would take.  So this communication plan was an essential tool for them. If you download the presentation, you can read this quote in its entirety. She just talked about what an effective tool it was for her team. Now a multifactored ‑‑ one minute ‑‑ evaluation is a solid foundation for developing an IEP. So, when families are having the evaluation completed, you want to make sure that you have qualified individuals, people who know how to work with kids who have hearing loss. Do you have a speech language pathologist conducting that assessment who knows sign language or can put that ‑‑ all of those pieces together? Sorry, the red paper just, like, threw me off. 
    So, the evaluation, why does your child have to have it? Basically, IDEA says it has to happen before your child can receive special education services, so that initial evaluation, they have to have it every three years after. If if the school wants to remove your child from an IEP, they have to conduct another evaluation to show you your child does not need an IEP any longer. Please know that. And any time a parent requests, they should be conducting evaluation as well. 
    So, the IEP is really just this foundation. I suggest every year before an annual IEP meeting you go back and you review it. Even on years two and three, in between, go back and review where your child started, review their progress. Make some charts, make some graphs to see is my child progressing? And take that back to the IEP team. And our teachers don't always do that. I have seen parents do it. So, parents, you can take the lead on that and review that assessment. Now we have, because we knew we only had 25 minutes, we have a great shared drive that we wanted to share with you with examples and expansions of everything we talked about. The communication plan is up there. So, if you want to take a look at that, that is great. There is also great discussion questions for IEP teams on that communication plans. We have sample parent reports that you can fill in and provide to give to parents you work with. We have letter‑writing tips. And information about special education law. 
    I know we're out of time. If anybody has questions, Janel and I would love to talk advocacy with you. We geek out on that. 
   >> JANEL FROST: I wanted to show you this folder that we created for you, because it's got things we use every day that make a difference. So, the URL right there? Copy it, and you can get to it. And it has our contact information on there as well. 
   >> TABITHA BELHORN: Thank you all for coming. 
   >> JANEL FROST: Yes, thank you. It's a G. She asked what the last letter was. A g. 
    [ End of session ]