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EHDI – Grand Hall BIDEA & Advocacy, Protecting the Parent/School Relationship

Casey JuddFebruary 28, 2017

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>> All right, we'll get started. So we're going to talk about IDEA and advocacy today. Individuals with Disabilities Education Act. A federal law that protects students in the school districts public to provide them with a free appropriate Public Ed. We'll talk about that. This is one of those summy cards. The word for pain in the blank...parent is advocate. That is sometimes how we are viewed.

Who am I? I live in Naperville, Illinois, a suburb of Chicago. I have three children. Samantha has enlarged vestibular aqueduct system. I work for the School for the Deaf outreach. I do outreach training and consulting throughout the state of Illinois, as well as one-on-one advocacy and IDEA support for families having issues within the school.

I'm president of the Illinois Hands & Voices chapter as well. Commissioner, I also dabble in ADA a little bit. Americans with Disabilities Act. As a commissioner of my local town. And...that's about it. Every time somebody says raise your hand, I don't know, my hand just pops up, that's that.

Let's start off with the legal stuff. Knowing a little about the law can help you to advocate and get the right services for your child and learning how to advocate teaches you how to get them to write well and some basic skills that you can obtain.

So...what is the purpose of IDEA? To provide FAPE. Free Appropriate Public Education. If you're going to place your child privately, protection is a little less.

It's designed to meet the unique needs of a particular child. That's why it's individual. They should never be placing your child by their disability category. Your child should be placed individually, by the needs, by the assessments they do for that child, what their needs are.

It is to prepare them for employment. To prepare them for independent living and to protect the rights of the child. And protect the parents rights too. What is our responsibility until the kid turns 18? Education, it's our responsibility. The better you are as advocates, the better your child will advocate. The more you do positively, the better-off they will be as well.

There's a website, a federal government website, IDEA.eED.gov. The entire legal text is there. You're looking for accommodations, specifically CART or interpreters. You can type in accommodations, interpreter, it will bring up all of the legal text that includes that terminology. You don't have to read the entire text to find something.

When you open it up, this is what it looks like. This is the first page of the website and then you choose, part B, from age 3 through their 21st year. Until they turn 22 or part C is up to their 3rd birthday. They move on to part B. They call these part B, birth to 21, early intervention and then the school district takes over.

So when you go into part B, if you look on the left, this is what you see in there. The chalkboards on your left-hand side is where you want to go and look for special education. When you get to the component, it'll give you all the specifics. If you go into the side for early intervention, birth to 3 group, that's what the website looks like and their model's a little different. You scroll until you find what you're looking for.

So...IEPs, who in the room is a parent? Okay...ages under three years? Okay...everybody's 3 to 22. All right...anybody have a 504 plan? Have an IEP? Okay. The difference between the two, the basic difference is that a 504 is for access. Okay? It's, it's accommodations only. It doesn't, it doesn't revolve around educational need.

So, if a child is, gets an IEP and they have educational components that are built within that IEP, but they made their gains and made progress and they're with their same-age peers, then they do not necessarily need those educational components

anymore. They can be moved to a 504 plan. We'll talk more about it.

So...my recommendation for 504 plans is to wait until your child is old enough to report back to you if they can. With a 504, accommodations are put into place, but there's no one watching out for that child. So, the child needs to be old enough and capable-enough to advocate for themselves and if an an accommodation isn't being met, they need to be the one that says to you so you can follow-up on it or to the staff, I'm supposed to get X and I haven't been getting that. Or...you know, I was supposed to get an FM at the beginning of the year and haven't seen it or I'm supposed to have an interpreter in this class, where are they? They need to be able to do that.

Also with children, you know...that aren't able to report, we don't know what we don't know about them yet. They can't tell us what they don't know. The more we can have someone watching over them, the better off we are. So...what do we do? Right? If our kids are educationally-sound and doing really well, I guarantee they're not advocates yet and they're going to need to be. So you can always have -- there are advocacy training programs that special ed teachers use all the time. Your child should be being you know, based on advocacy, can they advocate for themselves? A lot of our kids can, but do they? Until they do, we really should be watching them. So, keep that in mind.

A lot of schools, our state is really long and it's vast difference from the top of the state where the bulk of the population is down to the bottom. Down to the bottom of the state, some districts have 504 plans that look like IEPs. If it looks like it, acts like it, it is it. It's fine. You might see that from state-to-state, it can be different.

This is disability.gov. The 504 plan is through the Rehabilitation Act. It's not under IDEA law. It's a different law. If you go to disability.gov, you can read about a 504 plan and get the meat and potatoes of it and what that means. To be eligible for protection under 504, your child must have a physical or mental impairment in order to be eligible for it. A lot of IEPs can be speech-only IEPs until age 9. 504 is not for that student. It's for students that need access accommodations.

So, ADA, Americans with Disabilities Act. A lot of families you know, we didn't know we were going to have a child with disability rights, do we know much about it? No...I know when I got my child's diagnosis, I'm like, what do you mean, only old people lose their hair? What are you talking about? I had no clue. Being protective under the IDEA, that's a child

protection. Children can be protected under ADA too, in the world, but they can also be protected under ADA in the schools.

Because the difference between IDEA and ADA is IDEA provides access. ADA provides equal access. There's a big difference. So...a lot of kids that are academically sound, they're doing very, very well, they're in high school, they're gearing and getting ready to go to college, say and they want captioning. Captioning is a big buzz word out there. It's not cheap.

So...when they ask for captioning, their academics are fine, under IDEA, they do not qualify. You can open up an ADA case. Unless they're getting equal access, which we know from studies they're not. ADA can jump in and they're federally-protected. If a state entity such as a district is getting money from the federal government, they have to follow ADA.

So, know that. Have that in the back of your mind for when that time comes. Here's what their website looks like. So, when you come in, there's different ADA is a different entity than IDEA. IDEA is a spelled-outlaw. ADA goes off case law. If something happens, it makes a precedence. You need to say "has this happened before?" If it has, your case is much stronger than being a first.

All right...let talk about the IEP document. In the room, grades six and under. Okay...middle school? And then high school? High school's fun. We just started it. Okay...so, what and who is included in your IEP? We're talking about the physical document now, and the physical team of the IEP. And...what's included in it is your written statement of how the child is doing today. How are they doing right now? What's the snapshot in time? Do they have any delays? If they do, what do they look like?

Present-level performance is in there. Statement of measurable goals and measurable, we can't just say the child will learn their ABCs by the end of the year, right? We have to say how they will, they will learn to say their ABCs. When you see a goal written for your child's IEP, it's very specific on how are we going to get to that goal? It can't just be they will say their ABCs. We need to say within the first 30 days, the child will learn to say all, they will learn to say all of the alphabet and they will learn to know what the sounds are and so forth. It needs to be pretty specific. Has anybody been in their meeting and a goal is read and they're like "what on earth are you talking about?" Anybody? They are going at writing those goals. Monosyllabic and all these big words. Do yourself a favor and ask what that means. Ask them to rewrite it on the IEP so you

understand. If you don't know what they're talking about, ask them to explain it. It's beautifully-written, but if we don't understand it, it's not so beautiful.

How that progress will be met. Statement of any related services. If you have an IEP, you do not need a 504. Your 504 accommodations are built in. You'd never need both documents. And then the date of the start of service. Okay? That may be at your child's birthday, I guarantee most of the time, as they get older, it'll be when they do their IEPs. Middle schools typically do them January, February, high schools typically do them closer to the end of the school year. It depends on your district and how they do it. At the beginning, early childhood, for sure, at their birthday, even grade school can be at their birthday?

Who are the team members? The law, parents are written first. It's very important that you present yourself as part of the team and you have acceptance as part of the team. Not just, oh, you're so fortunate that we invite you to this meeting. That's not what it's about. You have an expertise in what? The child, right? You see your frustrated child coming home at the end of the day, you can report those types of things, that's very important information. If you have a good team, they value your opinion and I have to say the majority will value your opinion if you go in acting like you value theirs and like you're assertive and know your stuff.

One or more regular education teacher. What if you have a child in a special ed classroom? Why would you need a regular ed teacher? Anybody know? Consistency of the curriculum, absolutely. We have general ed curriculums we have to follow. In grade school, I recommend every person with your child should be at your IT meeting. All of them. High school, middle school, you think that's possible? If your child is struggling in a subject, I'd suggest that teacher be there.

Some states set it up where someone from the district offices need to come to that meeting. They have the power to say yes, to request, especially those out of the norm. However...a lot of districts, the principal of the home school has that authority and has that power. It doesn't necessarily mean that someone from the office needs to come, it could just be the principal of the school.

Any individual who can interpret test results. So, if I had an evaluation done, say I did a psych evaluation on my child outside of school and I want to provide those results, can I invite my psychologist to come? Yeah, just as a courtesy, let

them know you're coming. Like if you show up to your IEP meeting and you had four people on your list and there's nine people in there, you have cause for alarm. You can say "I'm not really comfortable with this, can we call it or who are all these people?" If you're comfortable with who they are, go for it.

If you show up to a meeting and someone is supposed to be there and they're not there. You'll get the choice whether they can be excused or not. If you're not comfortable with their input not on the table, say "I'm not comfortable with it" and recall the meeting.

Does anybody go to their child's IEP meetings now? How old?

>> [Speaker off mic].>> Fourth grader, 10 and 15-year-old? Yeah.>> [Speaker off mic].>> In second grade, okay, anybody else? High school. And

when do you think you should start bringing your child to the meetings? Right, so what she said, it's dependent on the child, really. Her youngest wanted to go from the very beginning, but her oldest wasn't ready, until sixth-grade, yes?

>> [Speaker off mic].>> Should the child be at the entire meeting? That's

dependent on the child. My daughter is 15 and a freshman and she's like "I'm out of here as soon as possible." She has a lot more weight than you think. They really do. They can self-report and teachers are going to listen to them more than the mom and dad.

If they are ready, you guys just play it by ear. At the beginning, in fourth grade, she'd come in for the last five minutes. When we transitioned from one school to the other, she was there for a longer period of time. Now she has to sit through the whole thing. She was complaining about it like three months ago. It just depends on the kid. If they're falling asleep or you know, bored or whatever, then, they're not ready yet. That's okay.

...acronyms, we're full of those, right? How many people have learned soak acronyms this week or heard things and you're like "what on earth does that mean?" And texting acronyms, I don't know what that is. LRE, Least Restrictive Environment. That's a big buzz word for our population. Sometimes the least restrictive environment as we think of it in the home school, in your neighborhood school, can be the most-restrictive for our kids. It's something to be very, very aware of and cognizant of for our kids.

ESY, Extended School Year, it's not your local summer school. It's for kids that have significant delays still. If they're delayed a little bit, chances are they won't qualify for extended school year. Just depends where they're at.

Child Find is for every kid. Anybody can report a kid they think might have something go on. A lot of ADHD kids are found from Child Find. That could be the parent saying "I think something's going on here, can we do an assessment?" That'd be done through child find or a teacher could say, I'm concerned about this, what's going on?

ISPs are Instructional School Plans. These are for private placement. If you choose to privately place your child, you can do, that you can do anything you want, right? The thing to understand though, is that their rights under IDEA are very limited. What happens with private placement is school districts get a lump sum to use for their privately-placed students and can do whatever they want. If they decide in 2017-18, we're just going to provide FM systems, that's all you get. We're just going to provide speech, that's all they're going to get, okay?

Keep that in mind. Some private schools run them like an IEP. It just depends where you are. Some of them will, if they're -- like, sometimes parochial schools are a block away from the regular ed school and they have an aid that walks the kid down for their therapies. It works out very well. It's just dependent. You can ask for anything.

So, this is great. If you guys can download my presentation, do it. This is a really good continuum and it just shows you, you know, what's, where, where we sit with that least-restrictive environment thing. If you have a chance to download it off the website, do that. It talks about what is most-inclusive to what is least-inclusive. It talks about everything from all different methods and modalities and where in the education system, the standard education system does that sit regarding restriction and access to information.

So...under IDEA law, evaluations are talked about in there. And how evaluations are to be done, performed and reported. All of the types are in there. Everything that can, you know, be, be be given to a child. If an evaluation is given to your child, ask a few questions. What is this looking for? Is this good for the type of communication that my child uses and how is it reported? Are there subtests? Has anybody heard of subtests? When you have standardized testing, there's typically three to four subtests within it. When they typically report on those, they average them. So, if you have a kid that has great

receptive ability, but not expressive, that could average out to be pretty average, right? We need to make sure as parents, we look at all the subtests to see if there's any scatter that we need to be concerned about. They may be great one way, but not another, yes?

>> [Speaker off mic].>> She said, that's the famous words in IEP subtest scatter

might what? >> [Speaker off mic].>> Indicate higher potential. Right. If we see a lag in

one side, that's where we need to go. And that may be in the case where they're not going to tell you what the scatter is, right? We want to know what the scatter is and then ask how they do it. If a person's performing the test, they know how to do it, what they're looking for, they should be able to explain it to you more than just their two-page dissertation of that test. They should have graphs and everything that state, this is what I tested, this is where we found the results.

And then you'll get into the bell curve, right? Anybody remember stats class? You get into the bell curve and they say "they're in the 50th percentile." They're failing. No, that's average. Our brains aren't working that way as parents. That's average. But we need them to tell us that. This is how this is reported, this is what this means, okay?

Eligibility, just because a child has a disability doesn't mean they're eligible for an IEP. They have to have need. IEPs are the next placement, if, if eligibility is determined, then we write an IEP document. If eligibility, if they say they're not, we bounce into a 504 plan typically. We go into what I talked about with self-advocacy needs, okay?

And placement. Due to this being the delay, this being the issue, this being the needs of the child, where do we place them? Placement isn't necessarily ability. It's a program. Okay? So it doesn't necessarily mean it's going to be at this school, they all go here, that's just the way it is. It's whatever the child's individual needs are. I've had kids that spend half a day at this school and half a day at this school. It's dependent on what the needs are and how we can service that child.

So...placement is, is a whole different there's so many different variables as to placement. We talk about the general ed setting and itinerant services. They service the child in the Gen Ed classroom. Because one is specifically a Deaf Ed school, doesn't mean they can't provide all those services. Just because it's a gen ed school doesn't mean they can't provide all those services. Those are things you can discuss to make the decision.

Procedural safeguards. When you have your IEP, they're going to hand you a document that's about this thick, right? Those are the rules of the law. Read them. Read them every year, at least once. You know...a lot of people take them with their IEP document and file them away. You need to know those, they're the rules of the law. They're specifically written to protect you.

Due process is where we go when things aren't going to work out. There are steps that occur before that within each state. We have formalized complaints that can be done before due process. We have that in Illinois. Mediation is always a step before due process. Some mediations are extremely successful. Always, don't always look at due process. It's extremely expensive, the majority of the time, parents do not.

If your child has a disability. Your child is not protected if they don't have a disability. I had a client I was working with that had a deaf child and that deaf child was diagnosed with bipolar disorder. The mom said, she's already labelled enough, I don't want them to know about it. While she was wielding scissors at teachers. She needed a behavior plan that they weren't putting in place because the parent was afraid to label her. We finally got her to put that label. If the disability exacerbates, they're protected under ADA. They cannot be expelled. They cannot be sent to disciplinary schools if it's due to their disability.

So...at age 14.5, you start the transition process. Transitioning from being a child in school to being an adult. When you leave middle school and go to high school, depending where they're at, how capable are they? Are they college-bound. Are they career -- are they going to go out and do a trade? Where are they going to go? A four-year plan is developed at that time. And it's reassessed every year to determine, are we still on track for that? That's what happens. That's what you're all going to be looking forward to soon. Five considerations of special factors. Behavior, limited English proficiency, blindness and visual impairment, communication needs and Deafness and assistive technology. When we're talking about any placement or any placement, those are things we have to take in. They're part of the IEP, in Illinois, we have one that says if you are a child that is deaf or hard of hearing, these things need to be taken into consideration. Yes, comment?

>> [Too far from mic].>> It has to be in place by the -- it's like their freshman

year. By 14.5. We did ours at 14. The schools know when they come around. Again, a loft these rules are state-to-state.

Depending on how your state does it. Okay? Linguistic and cultural accommodations, that's what should be taken into consideration. There's, there are states who have no communication plan. It doesn't mean you can't write one into it. You can put them in there under the accommodations section. You can say, I have a child, they communicate this way, how are we going to accommodate their needs with this. Keep that in mind as well.

Supplemental aids, accommodations and modifications. Anything needed to give them that level playing field. I always explain it as your kids out on a baseball field with the rest of his peers, all the kids are out there with a mitt and your kid doesn't have a mitt. The IEP is their mitt. That's how you're giving them the level playing field. If they don't have the mitt, they can't play the game with them, right? Or not as well. They're going to get hit in the head. Make sure they get the mitt. That's a good-written IEP executed properly. I've seen many beautiful ones that aren't executed well.

All right, every person on your child's team holds a piece of the puzzle to the educational success. It's true. They're all coming together, we're going to make one big picture and educate the child properly.

Know enough of the law to speak on it. Understanding your place and that you have a legal right to be there gives you the confidence to go in and advocate for your child. As written, the law ensures that the school or any governing agency provide a child with disabilities with a Free Appropriate Public Education. That meets their unique needs. This is an actual, verbatim, written, unique needs for the individual child. The one size fits all approaches, they don't work. You can have two kids who have exactly the same degree of hearing loss that are educated completely differently. That's why the individual component is very important.

So how do parents feel in the meetings? Did anybody walk in the meeting thinking this is a breeze? Did anybody walk in having no idea what it's about? It happens all the time. Mom goes in with a ponytail in her hair and sweatpants and they're doing an education meeting. She had no idea. It'd be kind if they tell them, but they don't. They didn't even know what was going on. The more you know, the more you walk in understanding that you have a right to be there and you can help to make that plan work for your child.

We're scared we're going to make the wrong decisions, we've been that way since the diagnosis, right? And you know, our kids

will grow up and hopefully they won't do the "I don't know why he didn't do this for me." It might happen. We fill intimidated by professionals because they know everything.

I can tell you, I teach special ed co-op districts, this class that's usually three to four hours. Usually it's the first time they're learning it. If you know this, you likely know just as much if not more than law and teachers in the room. Not the special ed director, hopefully they know a lot. I guarantee your gen ed teachers, special ed teachers, they know their subject, they might not know IDEA, okay?

When you're dealing with anyone, it's important to ask the who, what, when, why, how? I always talk about phone calls and how to handle those. If we have calls, threat go to voicemail so you can be prepared for the conversation.

Understanding the parents role. The school's position, public schools offer a standardized curriculum. They expect all children to follow that standardized curriculum, okay? They have a chain of command, typically the teacher that is teaching your child is down on the bottom of the chain of command. They have to ask permission and sometimes that permission is a person that isn't even in the building that your child is in.

Teachers and parents don't have the right or the authority to make decisions for the student. They do not have right to make decisions that involve what? Money. Okay?

Invisible team members are the typical ones that have the power to do that. Typical school policies, we can't make exceptions for you or we have to do it for all. Some have really good school programs and individualized programs. Here are 10 reasons sent to school districts to find out why they say no. They don't want to change. They like things the way they are. They don't want to make exceptions. Afraid of setting a precedent. They don't have a program. If they don't have a program, do they just not have to do it? No...you have to figure out a program. Okay? They're committed to their one size fits all services. They believe the services we are asking for are too expensive. They're overwhelmed by the child's needs. With that I always say "how do you think the parents feel?" If you're overwhelmed, how do you think we feel? We're not thinking with this, we're thinking with this, okay? It's a lot harder. They don't understand the legal requirements. Like I just said. I think I've been to 15 co-ops. There's hundreds of them. So...they don't know. They don't have staff trained to meet their needs. And they don't have staff. So not only they don't have staff, they're not trained. They don't have the staff.

What's the parents role? Well...our role is to plan for our kid's future. It's our responsibility until they can do it for themselves. To advocate for them, for their educational future. They can't do it for themselves. To advocate means to speak or defend another. If they can't speak for themselves, who can speak for them? Right now, it's mom and dad, our job. To manage your child's current education. Know where they're at. Don't be blind-sided when the report cards come around. We shouldn't be surprised that they slipped in that subject. Why? Maintain constant contact with teachers. That's much easier in the grade school than it is in junior high and high school. Junior high, mom, we got this. Right? High school? Ooh! Is your kid 18? They're very much, the child needs to be ready to go when they get to high school. They need to advocate for themselves.

So...how you see yourself, the more confident you become, the better the meetings will be. I was talking to a college student that's here, that works for one of our Illinois programs, she like "how do you get up in front of everybody and talk?" She's freaked out because she had to talk for 15 minutes in a session. I said, if you know your subject matter, it's easy. If you know where your kids are, you are more confident in the meeting. If you're nervous, have things written down saying "I forgot to ask that question."

Ladies, have you ever been to a concert or a ball game and you have to wait in a line of 75 people to use a bathroom and you get there and there's no toilet paper? Be prepared, right? You make sure you're on time for meetings. That you bring, put your good face on. This is a meeting. An important meeting. You go to an interview in your shorts and tank top? No...you wouldn't, right? I hope. You're not going to get the job if you do. But...you're prepared, you bring your questions, and any new information.

Once you establish a relationship with your school district, I always say the actual physical meeting is just tying everything up. All of the other stuff should be taken care of beforehand. You should have been able to review any, any testing that was done on your child to know you know, where they're sitting right now. If you have any evaluations that have been done outside, you provided them to the school so they've had the ability to look at them. So that when you get into the meeting, you're not blind-sided by anything. You've already done all the work. You're buttoning it up, making sure all the things are written properly and moving forward.

You present all of your problems and concerns in writing. You can have verbal conversations, but do yourself a favor,

afterward, shoot an e-mail and say "it was great talking to you today about X. I want to make sure we're on the same page and I understand properly, we're going do this." It's a great way to button it up to make sure you do understand and you know you said it and you expect it to be done.

Keep an open mind. Try not to get angry. Try to go in and create that camaraderie where you're all trying to get to the end result which is a well-defined IEP so the child can be successful. Try to make sure that you, you keep your anger at bay. Getting angry does nothing, except put you behind.

Methods of keeping records, many different types. You can do contact logs. You can do journals, calendars, I do everything online. Ebay, voicemail, all of that. You can keep all of that. Yes?

>> [Speaker off mic].>> He said they also use their phones to record the entire

IEP meeting. You can request it, you do tell them, right? If you feel the need to do that, you can. If they're okay with it, that's fine. They can't say no. But a lot of times, they'll bring a big system out, we'll record it all. Sometimes they can -- it can rub them the wrong way. If you handle it right, say "I just want to make sure I don't forget anything, are you okay if I record this?" It's better than say "I'm recording everything you say and my attorney is on call." Which one would you prefer?

>> [Speaker off mic].>> Right, yeah, sure. Great, I always say, nowadays, every

time you come up to a school building, cameras there, they have to buzz you in. If you're that parent, it's "attention staff, that mom is entering the building." Believe it, that's what they're doing. You and I are on the exact same page. Be friendly. They are doing this because they love it. Even if they're rubbing you the wrong way, chances are, they still love what they do. The nicer we are and the bigger team we create, you know, you make friends with them. That's the best way to do things, yes?

You are absolutely correct -- okay, so...her comment was...how, how long do you keep playing the game if nothing's being done? Basically. And there comes a point where yeah, you can't, but you have to follow the right procedures. You know? And absolutely, you are absolutely correct. There comes a time, I have a client I'm working with right now in high school and the teachers have all said "I didn't even know he had that accommodation. That's his accommodation? I was giving it to Danny." I think we're far past the being nice phase, but you handle yourself appropriately and follow the correct channels.

But absolutely, you're right. It's not a perfect process by any stretch of the imagination, right? It's just not. We pick our battles. Always go in knowing what you're willing to walk out without. Okay? Know what you're willing to give up. Okay? Be effective. Try to control your emotions. Anybody in here a cryer? Right? It's hard not to, right? If you start to uncontrollably sob, how do you think everybody else in the meeting feels?

However, always bring someone with you. If it's mom and dad. If it's mom and her sister, if it's grandma, whoever it is, tell them how you are in these meetings and say "this is my signal." If I do this, can we take five? It doesn't matter? Right...okay, then, Kleenex. There are some people that just, it's just going to happen. And sometimes, we cry tears of joy because we get that IEP that we're hoping for, right? We prepare and prepare and waiting for resistance and we get this beautiful IEP and you're like "thank you, I love all of you." Right? It happens too. Ask questions. If you don't ask the question, the answer's no. If you don't ask the question, you don't get the response. So, ask. And work together and be willing to state that. I want to work as a team. I want to help, what can I do from home to help? I want to help.

Communication, you can communicate all different ways. You can communicate via e-mail. A lot of teachers may not respond to e-mails in specific ways because they're afraid or whatever. So...you can have a verbal conversation, but remember to do that follow-up e-mail. Just to confirm this is what we agreed to or what we discussed.

So, why do parents communicate with school? We're going to request something, we're requesting some information, we're requesting action, something's happened and we need to find out why. To provide information, we've gotten a test result or something's happened. We provide that information. To decline or request. We communicate. Express appreciation. How many of you send thank you notes or things? Yeah. Send thank you notes. I can tell you, I advocate 365 days a year and I don't expect a thank you, but when I get one, it feels so good. Teachers are that way too. Tell them. Man, you are a rock star! I appreciate you. Thank you so much. It'll mean the world to them and when you need something from them, I guarantee you have a better in.

To build relationships, absolutely. Identify and solve problems. To clarify your decisions, any decision that's been made and to motivate people. Like, you feel like something seems to be falling through the way side, you can always send an e-mail

and say "we've been doing such a great job on this, how's it going?" It might be like, ooh, I forgot I was supposed to be doing that or whatever. That's not going very well. I was kind of wondering, because at home, this is happening. Open that dialogue, you have good communication, right? You could talk about it, yes, question? Share success stories they haven't seen at school. Sometimes, educators, you can feel frustrated. This isn't happening, but you find out from mom, it's happening all the time at home. Then you celebrate. That's a victory. Excellent point.

Common parent/school problems. I love this picture, that looks like my cat but how are they both looking at this fish. One things it's lunch, right? The other one thinks it's a cute little fish. Sometimes as parents, we think it's us. We think there's way more than there is. We need to be realistic on what's going on too. Lack of information. People are withholding information, whether it be the district or the parent. Lack of options. Hidden issues. Feeling devalued. Poor communication or intimidation and loss of trust and...that, remember the "er, er, school personnel, she's entering the building." They've lost trust. Once that happens, you know how hard it is to get it back? We'll be dealing with them for the next 15 years. 15-long years. Believe it, when you go to the middle school, they're telling them. They're telling them that you're a problem parent, all right?

So...what is feeling devalued to reduce or underestimate someone? Make them feel worthless in what they do. You feel devalued when you're lied to. When important information is withheld. This goes both ways. I'm not just talking about teachers or parents, both of us. It can go both ways. When you're patronized. When you sense hidden issues or agendas. It makes you feel devalued.

Control your emotions. We can't always not cry, out of joy, sadness, whatever. I've seen teachers get angry, I've seen parents slamming doors. I've seen it from both sides. Sometimes the teachers are just as frustrated. Maybe not with the parent. Maybe with another person at the table. We have to control our emotions because at the end of the day, it's this child we're making this plan for. It's not about that person's individual agenda or their needs. It's about that child.

So, tips to controlling your emotions. Be the professional that you are. Be the adult that you are. Don't throw adult temper tantrums. It doesn't get you any -- it doesn't get you ahead. It gets you behind. I like this ugly cry guy.

Plan your time thinking and preparing as opposed to "I'm so angry with them, this school district is just messing around with me, they're damaging my child." Think of what can you do to convince them to work with you? Again, I'm going to the point of this school that's just not working with you. Then it's time to go above that person and find out what you can do. There are avenues to take, okay?

>> [Speaker off mic].>> You know...I'll address. You can ask to videotape it.

You can ask to record it, but I caution against it, only because it puts defenses up. It really does. It makes, it makes the hairs on the back of your neck stand up. They feel defensive like why do they want to record this? That's my biggest air of caution. If you feel like it's just because you can't remember stuff, you could always have someone come in to physically take notes for you. You know...a friend, an advocate to come and take notes as opposed to recording. That might be, be more beneficial. Question in the back?

>> [Speaker off mic].>> He's saying if somebody can't be at the meeting, it's a

benefit. You can have it transcribed. Yes, those are all valid points, but the reality is, it does put them on defense. It does. It puts them on defense. Yes?

>> [Speaker off mic].>> Right, that goes back to where I said when you go to the

physical IEP, all of that stuff should have taken place already. That's a perfect example of that. So...you know, in the IEP document, do you remember where they said, parents, what do you think your child's strengths are? What do you think? Those things should be prepared before the meeting. You need time to do that. You can't sit there in front of a bunch of eyes looking at you trying to figure it out. That should be done before. That stuff doesn't need to be happening. You can have what they call a draft IEP document, that's surely legal to have. Okay? And that's a perfectly legitimate way to do -- to hold these meetings as well. In the back?

>> A couple years ago, when we first started our IEP, my daughter needed an interpreter and so, like, the IEP took place in April, so the following year, she was going to have an interpreter, nobody was given. And I kept asking. And asking. And then, another deaf child came into her classroom and she had an interpreter. And I know that that little girl had started school later than mine and she had an interpreter, day one. So...for that whole school year, this little girl had an interpreter. The interpreter interpreted for both children, but...after I found all that out, I kind of blew a head gasket and I told the special education director you know, I don't know

why my kid is less important than this kid. It's in her IEP that she needs an interpreter and they kept telling me "we don't have enough to go around. We don't have the resources. We don't have enough people in our state that are certified." And they kept trying to, they call them sign language specialists. They're not certified, they may know the basics. They may know their alphabet. And...so, how would I -- I mean, this year, it's great. It's phenomenal. She has an interpreter, she is blossoming in language. But...I have the feeling that eventually, because she's only 5, eventually there'll be a time where they might try to pull that again. So how could I -- I don't even know what I'm trying to say. Are you just feeding me stuff? Since it's in the IEP, do they have to --

>> IEP is a legal document. It's not a suggestion. If it's written in the IEP and the state is not following it, then you need to go to the state Board of Ed and you need to file a complaint. That's where you should have gone after the first time you asked. You're not dealing with them. The noncompliance complaint is, I have an IEP and they're not following it. If they can't do it, you need to move on to a higher level. It doesn't mean you have to scream and yell at the school, which you did, because you didn't know. It means it's time to take it above them, for sure. They might not know as well. IEP is a legal binding document. It's not "I guess if we can, we will." No, if she gets an interpreter 100% of the time, then she gets an interpreter 100% of the time, right?

>> Yes.>> My question is, I asked this of my IEP team and never got

an answer. We received a draft document before the meeting. Our state, ten days or whatever. We had the meeting. Everything is discussed, and then they'll send home an approved IEP. And...sometimes you find in there, there's stuff that there was discussed, but not included in the document. I've asked why don't you send home, at the end of the meeting, the document still in draft? Until I approve it and say everything is in here, that we discussed in the meeting because what happens now is if you have some stuff that needs to be added, that was part of the meeting, that wasn't included, they can call it an amendment, which is not an amendment, it was part of the original meeting. Why do they wait until the parent says the document is approved?

>> They shouldn't be doing that. When you go to the IEP, you have ten days to review that document. It shouldn't be an amendment until you say all these things aren't right. It might be something so simple as, we left out that you know, the interpreter will follow her to the X room because she needs to get through to somebody. That wasn't in there. That's important

information. You always write an IEP document to an unknown participant. Someone who doesn't know your child is in there. Always write it to the stranger, always.

>> I don't know where to start. I think my frustration as a parent. My daughter, we found out when she was four and she's in the fifth grade now. She originally went to the auditory oral program, but that closed. This past year, she transitioned into mainstream public school. It was a shock. She, she would see a Deaf Educator teacher every day for a couple hours. On language and reading and math and then now, she sees a Deaf Educator, 30 minutes, twice a week and when I, I had suggested at the meeting, I think you know, at least once a day or at least something and they kept saying, that's too much, you're asking too much and you know, your daughter doesn't need that. And...it was hard to know how to really come back and say, these are the things I think she needs and they're like "no, you're asking a lot." You're getting the most, what most people get. It's kind of the things I was told.

And so, then, like, people that I've met here, you should ask for like a tutor, you know? Because like, she's learning sign language and she's struggling in reading. And...you know, she's at a second-grade reading level and in a fifth grade. She's learning sign. She just got an interpreter this year.

>> So without knowing your full case. I'll wing it. The recommendation is when you're asking for something. Have solid proof why you think it'll be a worthwhile prospect. There are studies you can utilize that state that language deprivation can be created just by not having a, a huge part of it in every day schooling. Have some validated reason why you're asking for what you're asking for. You know...I often say would it hurt to do this? Would it hurt her to do this? Why don't we try it? Can we try it for just three months? That's a good one too? Can we just try it on a temporary basis? Can we just try it? It'd make me feel comfortable. Sometimes they're looking at it as she's making progress and if she's making progress, they're fulfilling the obligation, however...that doesn't mean that we can't still enhance it, but how can you get to that? By finding out, hey, we've been doing this at home. It's really working. Is there like -- most classrooms have aids in them. 30% of every kid in the classroom has an IEP. There are usually aids in the classroom. Can that aid do X? Can we try it for a couple weeks and see if we can get better progress. I'd have to look at your entire case to see where is she at? Does she really need more? We have a comfort when they're in this bubble and protected and get all of this intervention. Sometimes they may not need all of that intervention.

>> I think what's hard, I don't know where to get that data.

Even though I hear about it and know about it, it makes sense to me, but to be able to get valid data and go....

>> I know they're limited. I don't want to, you know, obviously ask for too much or, or think I'm entitled or anything like, that but at the same time, I'm just like...there -- I mean, she's like the only kid in the school that's deaf.

>> Right.>> So then it's just like....>> Here's what I'll recommend. Stop by me before you leave.

Get my e-mail. I'll help to find some data. Sometimes it's the only kid. They don't know what to do. If you say "this is what I learned at this conference..."that will help them. Yeah? Yeah, that is showing that you're accurate. So...ask them. How is she supposed to make gains if she has a big gap still to close. That's important information. For sure. One more question and then...I'm getting my --

>> I'm going to be quick. Really fast. I've been doing IEPs. My son's in 9th grade now. We started out at Sunshine College in Texas. They prepared us what to do, when we transitioned into mainstream in North Carolina, they kind of warned us. I wasn't prepared for all the nos, but what I started doing was taking some to the state. I know how to do an IEP, run my own IEP meeting. I always had them sit with me just in case. If I had a question, I'd lean over and ask a question. This is still my IEP meeting --

>> The best advocate doesn't talk.>> Right, but just their presence was enough. We'd always

meet before the meeting. I'd let them know what I wanted, is it reasonable, do you think, based off our previous IEP and how they're doing now, is it something I should be asking for? That always helped me out, just being there was enough. I'd take someone from the state and just have them sit, you know...I'm sure you can run your own meeting. Have them sit with you during the meeting.

>> Well, thank you all for coming. I can yell out my e-mail address if anybody wants to jot it down. I'm not in the directory. I guess I'm really not here. It's Andrea.Marwah@Illinois.gov. All right? So...e-mail me. If I can help you, I will. Do yourself a favor, I hope you made connections with other parents. Sometimes their stories and what they've gone through will help you solidify what you need for your kid. Good luck, thank you.[applause]

[Presentation concluded at 2:47 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."