ROUGH EDITED COPY

EHDI
Malpensa ‑ 1:45 pm CST Breakout Session
March 5, 2019

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LEAVITS!! An Advocacy/IDEA Parent Education Tool for Providers
with:  Andrea Marwah 
    Please standby for realtime captions... 
   >> ANDREA MARWAH: Welcome to this session. I am from Illinois, so welcome to Illinois. And are there any parents in the room? Have you gotten my e‑mail like seven times? You will. Apparently Google had a problem, so I'm still welcoming you to Illinois, even three days later.  So if you do, just delete it. It doesn't mean that you're meeting us again tonight. Welcome. I do advocacy, counseling and trainings throughout the state. I I had an idea to develop a tool that early interventionists and early childhood providers could use to help parents understand that they have a legal right in the system. Because oftentimes parent walk into an IEP meeting with no clue that they have any involvement at all. What could I do that would take you three minutes at the end of your session? So I developed these cards called LEAVITS, meaning you leave it when you go. You're not teaching them this stuff, you're basically introducing it to them. So, what I look for at conferences is people that want to try them out and provide me with data on what you liked about it and what the families liked about it. And I have everything you need to get you started, releases and everything. And releases so I can get the data as well. When we're done, if you're interested and you would like to give it a try or like to look at the materials and tell me what you think about them honestly, that would be great. I would love to, at some point, try and market these to early intervention providers, departments, etc. 
    We will go on, because we have 25 minutes. What I will do first is have Jess pass out an example. Each of you will get one. There are 16 LEAVIT cards that I have created to date. So, You'll just get one of them. This is the part that you would leave with a parent. 
    All right. So, the hopeful outcome of these are that EI or EC providers will utilize the cards and parents will become more aware of the system. Parents, in turn, will learn how to advocate for the child in the system. We're hoping that the cards will entice individual families to want to gain more information. If there aren't enough to go around, we can share them. Pass them on to someone once you're done. Please don't leave with them, because I need them.  If you are interested in doing this, you will receive an e‑mail of all of them plus all of the instructions. Providers would utilize a PDF of the first section, 16 LEAVIT cards, a demo of how to manage materials, instructions on how to print and provide the cards to your families. The cards that you have are what you would leave with the parents, but you would also get a card that is similarly designed that give you talking points in case it's a topic that you don't know about. It would give you a few bullets to say to the parent before you leave them with the information. I give you a form that you can personalize to get release of information from the families so you can connect them with me. 
    There is a how‑to guide, and it lists all of the 16 LEAVITS that you would utilize, that you would receive in the package. This is what the LEAVIT cards look like. On one side, it has one topic. For instance, the first one is what is advocacy? It defines advocacy in several bullets so that all different learning styles can understand it. On the back, it has provider points for you to discuss with the family. Again, you are not teaching them the topic. You're giving them the thing and saying hey, I want to expose you to this information. The perfect ideal time is at 2.5 years old, right? But it's never too late to start to provide these. Here is the example. What is advocacy? Right? So you can ‑‑ you would give this to the family. They would read it. It gives them all the information they need. Then you have your provider talking points. And this is what you can do. This is the information that you can say to them. You can read it verbatim if you wanted to. In this LEAVIT, I want to talk to ‑‑ I want you to take a look at some websites about advocacy and what it means for you and your family. And then don't forget your homework. We'll discuss it all at the next session.  So they have homework to do. And on the back of those cards, you will see that there is homework for them. And I give three to two websites that they can choose from to go in and then their homework is to define what that card is. So, if it's what is advocacy, then their homework is to define what is advocacy. What I'm hoping the outcome will be is that families will ask more questions and seek more information. And you can provide them with resources. This is just a good way to open the line of communication. 
    So what would a parent get? They would get a letter of introduction, introducing them to this test LEAVITS program. A letter of release so the provider can share their information with me. Included is their family name, address, e‑mail, and the child's age. And then e‑mail contact so we can welcome them to the program. I'm waiting to get enough people to run another program, so you are aware. So, sometimes that's the waiting game. I have done it with like 16 people three years ago. And I did 12 the second run. So, I want to get it more nationwide. I have done it just in Illinois. I want to see if other states are interested in stuff like this as well. You want to do the data checks before you invest a lot of time and money into it. 
    The family would keep these cards. I purchased these, and I think they're 12 for five bucks. You can print them off and fold them in half and give them to the parent. It's as simple as that. Or you can laminate them, and reuse them. Or you can use something like this. And then it keeps them clean, they give them back and you reuse with other families. So, you can use them in many different ways. I have them here on a hard card stock that you can use as well. You would have to do the printing. That's the negative and some of the information that I have received from providers is there's a lot of printing. It's part of the test run. And it might be too much printing. Do you have to print them in color? No. 
    On the back, what is advocacy, does anyone have that one? The LEAVIT that says what is advocacy? So on that, it basically has bullet points of what it is. And on the back, here is where it says your homework. Visit more of the sites below and define advocacy in your own words. That's all the parent has to do. Not least restrictive environment or anything else. We're just going to talk about what component of what this all is. There's a card on LRE. There's a card on acronyms. There's a card on extended school year. There's 16 different one‑point cards. It just makes it easier. What's going on with parents with kids in early intervention? They're freaked out. We're already consuming tons of information as it is. How can we get this very important information to them without overwhelming them? One card. Does it mean that you will leave the one card every time you go, and then you will go to the next card? No. You wait until they're ready. It might take them three weeks. It's okay. I have gotten feedback like that. I can tell you that the individuals who have used it, they really did like it. They liked the idea of being able to provide this information, small snapshots, to their families. My anticipated outcome is more educated IEP teams, people understanding the process. More realistic expectations of what a district can and cannot do. And better communication. 
    Here are comments I have received from families from first runs. This would have relieved a great deal of stress for me when my child was young and I was trying to navigate everything. It has helped me gain clarity on some things now. I love how this puts the basics in a concise easy to understand flow and format. And it gives helpful websites for additional information. A must for any newly diagnosed family. 
    The second quote, this was really helpful as we were gearing up for the IEP process. It taught me things I didn't know yet and reinforced things I'd already read. It also opened the door to ask our therapist for more information. For someone who doesn't know to research these things, it would be even more informative. 
    Comments from providers. Who are providers in here? You guys are great at giving information. That's why I'm seeking you out. This is garbage? Then tell me it's garbage. They like what they liked the most is it's easy for parents to keep the cards together and refer to them as they have questions. They liked the information that was shared with families. However, they think it would be more helpful to pick and choose more information. I never said you had to go in order.  So you don't have to use all. If somebody already knows what advocacy is, then go to the next step. You don't have to use them in order. You use them however you would like to use them. And then having ‑‑ they liked having a structure to discuss topics related to advocacy. Things that they liked least, sometimes they found themselves printing a lot of paper between the sheets that were for them. And there's the thing. There are instructions for you guys that you don't really have to print. Just read them on your tablet or phone or whatever. You don't have to print those. All you really have to print is the ones for the families. 
    Some of the information was too basic, again, picking and choosing what you want to use. And someone said I might not give all of the cards for all the families. Some were too simple like what is an IFSP. And some cards might be too overwhelming for families with a baby, such as transition. Maybe there could be different levels of cards for when a parent is just starting versus nearing transition. Yes, I would love to make more cards, but I want to make sure these work before I proceed. So, another comment is just one sheet. If you look at them, and I have them up here, if you want to take a peek, the one that you have is for parents. But if you would also get one that looks very similar and it's provider talking points. And that's true. Most know enough to go through the one LEAVIT, so don't use these. 
    Less cards and more information on one card. Some families are only ready for one piece of information per time. They think the LEAVITS could be divided into different levels. More information on transition and less info on what early intervention is. And then they thought the content and method of delivery were good. Okay. So, this is my sales pitch. If you are interested in doing this, I would like you to contact me. I have business cards up here that you can take. If you have questions regarding it, I would like to know if you are in a state and you wouldn't mind partnering, I would be interested in that as well. Before we get there, any questions? 
   >> I missed probably the most important part. So, are you ‑‑ is this what providers take to families and go into their homes and share this with them? Or is it something you're mailing to them or something you can use on social media? 
   >> ANDREA MARWAH: The premise of it is for an early interventionist to share it when they had interactions with the family. So, it would be when you're in doing a home visit, you would leave it there. And then when you go back to your next home visit, you would discuss it. And it's literally, we know how much time you have. It's two minutes. It's not a whole bunch. Although it can open conversation, obviously, if they do have a question, but for the most part, it's to make just these. ‑‑ it astounds me to know that parents didn't know that they could attend the IEP meeting or make recommendations. I have heard a lot of providers say I tell them these things. The problem is we're telling them so much stuff. So, how can we make it more simplistic and actually stick? Being a parent myself, I remember how much information was dumped on us at the beginning. I live for that type of information. But not everybody does. So, how can we help these families to understand this is important to make it easy for you guys. To not have to go out and become an advocate. 
   >> So could you provide a little more information on clarify when you say to partner, like, what that means? Are you collecting data from the families? Or what are you collecting? What do you want from the families? 
   >> ANDREA MARWAH: So I am collecting what their impression of the program is. I want to know does the program work? Does it work for families? Professionals? Putting a lot of man hours into something like this, if it's not productive and if it's not helpful ‑‑ 
   >> Are they signing up in some fashion electronically with you that you will systematically collect feedback? 
   >> ANDREA MARWAH: Yes. I do it through survey monkey. When I first did it, I offered gift cards, but it was out of my own pocket. It was great. I found that the second time I did it, I got just as much feedback without offering the monetary incentive. So, I do ask for feedback from the provider. And it's a simple survey monkey. It's not a ton of information. And then I have a survey from the parents. I wanted to know ‑‑ I want to know their address in the event that I need to send them something or whatever. If a family doesn't want to give their address. 
   >> So they can do anything anonymously? 
   >> ANDREA MARWAH: Absolutely. But if they do it anonymously, you need to let me know about sample X. 
   >> Is this your internal, or would they need to be informed that it's part of a data collection publication IRB kind of thing? 
   >> ANDREA MARWAH: The letter explains exactly what it is that I'm seeking. I'm not seeking any data like that. Do I trademark LEAVITS as a term or is everybody thinking that's the dumbest thing? Where do I go next? Is this an, Andrea, you're dreaming, stop. 
   >> And kudos to you. I just ask, because we need to convey that to families. 
   >> ANDREA MARWAH: I would rather the provider not be anonymous, because it helps me to have a good dialogue between providers. I noticed when I get calls from families, if I started working with them before they turned three, the outcomes are so much better than after the first IEP meeting not understanding what the position is. Obviously I can't meet all of them. How can I ‑‑ what else could we do. Just it's ‑‑ I would be willing to partner with them and have them do the data collection in their state and me do it here and see if we can make it take‑off. It's not a profit thing. I would be willing to design it for an early intervention program, you know? So I think it's a good tool if early intervention if EC providers want to use it. 
   >> I have a question of curiosity. You're now in the beginning and you're getting going. You've got three elements here. And you're going to divide those? Are you going to include Spanish and other states that tend to have Spanish‑speaking folks? The other thing is will you have any possibility of using an app so people can then just click through it? So that's one question. 
    And then the third thing is parent forum, like an online forum? Is that a way that we can quickly respond and engage with one another? A forum. Do you have that? I know I'm looking ahead, but what do you think about the three areas? 
   >> ANDREA MARWAH: The app thing, I would love. That would make it simple for providers. You bring it in, tell them to download the app, it's all there. For other languages? So Illinois has one of the highest populations of Spanish‑speaking individuals, so yes. Of course that would be. But I need to make it go through in English first to see if that would work. So, yes, definitely. 
    And the forum, I hadn't even really thought about it. But a lot of people want to be anonymous. I think that a lot of people aren't at the point of wanting to discuss it. But it's a good idea to ponder for sure. 
   >> ANDREA MARWAH: Maybe if you set up Facebook or a person that is willing to say something and they want to post a question to a group, and then in another community or another program. Anyway, something like that where you might be able to do it. Maybe it can be another point on the sign‑up sheet, if you're interested in doing a forum, too. And maybe it would be good to have a professional forum. I have tried it in two segments. Everybody liked it. I just need more data. 24 people is just not really going to make it happen. But if I could show Illinois early intervention, look at this! 75 people loved it. I would have more of a chance to get it put into practice. 
   >> Have you had any issues with the reading level? Literacy ‑‑ 
   >> ANDREA MARWAH: And I tried to keep it at the reading level that was understandable, hence why there's multiple bullets. But it is something that has crossed my mind, hence why if the professional is in that room and they know that that might be an issue, they could maybe explain it. But it is definitely something to think about. I don't know that they're at a high level. Did you read any of them? Okay. Did you think it was too high levelled? We get 25 minutes. 
   >> It is a lot of text. 
   >> ANDREA MARWAH: Did anyone get the acronym one? That is a lot of text, but I tell you what happens. We have so many acronyms in this world, and especially in our hard of hearing world, and we're like what is that? So it was more of a ‑‑ when I developed that one, it was more of a could they put this on their refrigerator and refer back to it when someone uses that term? I could tell you from a parent's perspective, I didn't want to be dumb and ask you guys what it meant. So, it's an easy way for them to figure that out. All good points for sure. And that would be something if you wanted to try it, if you have lower socio‑economic clients and you want to try it, and you could give me that feedback, then I could work on that and make cards that are more basic. Yeah. We have two minutes. 
   >> So this may be thinking way, way ahead. But I am on the older side of this group. I teach kindergarten. And I have found that when you do early intervention, parents are getting all of that information, and then the kids go to preschool. Sometimes they get home visits with preschool, and kindergarten, it stops. That's also the year that they're triannuals are coming up again. And so all of that terminology comes in and they're not used to ‑‑ they have their IEPs every year. So, I would love for you to think about ‑‑ I send home homework for my kids. So, it would be cool to have a program like this where once a month you send home parent homework where every parent gets it. It's not me underhandedly being like your IEP is coming up. You might want to look into advocacy. So, it doesn't look like me going against what the district recommends. I don't have as much conduct with parents if kids are bussed into a program. To have a program where you can send home little things that parents can look at every week. 
   >> ANDREA MARWAH: I think these could be easily electronically sent. I don't see any reason why you couldn't send them home to everybody. 
   >> Just something to think of. 
   >> ANDREA MARWAH: Yes. I think way far ahead too. Teaching kiddos how to self‑advocate. That's a lot for them to learn, too. It's still a good training tool. There are curriculums out there, but this is something that could help support that as well. If you're interested, you can come and get my business card, think about it, send an e‑mail and say that's the whackiest thing I have ever heard. I hope you consider it. Just let me know. Time is up. Thank you, everyone. 
   [ Applause ]    
    [ End of realtime stenographic captioning ]