Our Toolkit to Tackle Life’s Milestones - with Ann Siegel

Episode Transcript

Maddie Crowley: You're listening to "You First; The Disability Rights Florida Podcast." In this episode, we talk with Disability Rights Florida's legal director, Ann Siegel, about our new resource, our transition toolkit, and how youth and their supporters can use it as a transition to adulthood.

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Maddie: Hello, everyone, I'm Maddie.

Keith Casebonne: I'm Keith, and we're the hosts of You First. Today, we're chatting with DRF's very own Ann Siegel. Ann is the legal director at our organization and has been very busy the past few years putting together one of our latest resources, our transition toolkit.

Transition is anytime youth are transitioning to a new phase of life. You can think of it like big moments in your life growing up, like going to middle school, or then training at a job, or maybe then being able to, and registering to vote.

Maddie: That's right. We wanted to highlight this new resource, especially because in just about a week, students are heading back to school...

Keith: So sad.

Maddie: ...which, by the way, [laughs] I'm literally in denial about it. My brain thinks it's still June, but here we are.

Keith: It should be.

Maddie: Yeah, [laughs] but the transition toolkit has so much helpful information regarding education plans, like IEPs, 504s, but also things like self‑advocacy, assistive technology, driver's licenses, and much more. Thousands of people from across the state and across the country have access to the website or have the physical guide.

It's accessible, easy to read, and even has information that I find helpful as someone out of school navigating adulthood. It has something for everyone that they'd be able to find practical and helpful in their everyday life.

Keith: Definitely. This toolkit offers youth and their supporters' information on just about everything someone growing up could need to plan for a successful future. I wish I had a book to plan for my future back then.

Maddie: [laughs] I know.

Keith: You know. [laughs]

Maddie: Where would I be? [laughs]

Keith: Yeah, right? I know. We're excited about this and to talk about it in our podcast today. One quick housekeeping note before we get started, we are taking the rest of August off, and we'll be back in mid‑September or so with our next episode.

Maddie: We have some great episodes planned for fall, so definitely stay tuned. Without further ado, here's our conversation with Ann.

Keith: Hey, Ann. Thank you so much for being here today on the show. Please introduce yourself and tell us a little bit about who you are.

Ann Siegel: Thank you. I'm Ann Siegel. I'm the legal director at Disability Rights Florida. Disability Rights Florida is our state's protection and advocacy agency, and I've been with Disability Rights now for about 14 years.

Maddie: Awesome. Thank you so much for being on the show to talk about transition, our brand‑new transition toolkit, and some of the resources that are out there for folks as they get ready for school, which it's incredible that it's already August. I feel like this year has flown by. I can't believe school's starting this month.

Before we dive into the toolkit and what resources we have available for students, families, and people generally that are coming into their teenage years and starting to plan for their future, could you tell us a little bit about what transition is? Just generally, maybe for someone who's never heard of transition or transition planning before.

Ann: Absolutely. There are a bunch of transitions that a student will face in their academic career. For those kids who go into early preschool, there's that transition from preschool to kindergarten, and then we have that kindergarten to first grade.

Then, we move from elementary to middle to high, and then high out to post‑secondary. All of the transitions are very important for education, because every time you're planning a move, you are building a foundation on what the student is going to learn and eventually what their post‑school outcome will be.

Every transition is very important, especially when you're deciding what kind of curriculum your child will be exposed to. It's very important. All of the decisions that are made will build on what the child will be able to access in the coming years.

We always recommend for our folks that students start out on the Gen Ed curriculum with the regular standards and that they try that with obviously accommodations, modifications, supplementary aids, and services in order for the student to be successful.

The reason we recommend starting out in Gen Ed curriculum is because if a student doesn't have that early foundation, later in life, if you try to switch back, that's where the problem will happen.

In Florida, you can either be on Gen Ed standards or on access points. Access points is a alternative to the general ed curriculum, but it won't give you the full foundation as the general ed curriculum will.

If you were to start out in access points for elementary school, and then try to move over in middle school or high school, it would be a much stronger learning curve for the child, because they would not have had that early foundation.

We highly recommend folks meet with their school teams and work with whatever supplementary aids and services, but try to keep the student on the Gen Ed curriculum. That will then, later in life, affect the choices that a student will make.

In our state of Florida, at 12 is when we start the big transition planning, and that's the planning that's going to bring the student into post‑secondary, whether it's employment, some training, or education.

It's really important to have that early foundation and to build on that and to know that when you're planning for your child, transition is going to be vitally important. You look at in Florida, we start at 12, and it could be earlier if the team deems it appropriate, but we start looking at the student at 12, and what do they want to do?

There should be some kind of career assessments, inventories being done so that student knows, "If this is my interest, these are the skill sets I need to build on so that I'll be successful in post‑secondary." Like I said, very important. We look at what the interests are.

There are different assessments out there for students based on their skill set. It'll give the school team and the folks planning a better idea of what this student is interested and what they want to do, that all‑important question, what do you want to be when you grow up?

Keith: Just thinking about back when I was in school and going from elementary to middle to high school and so on, there's so many decisions, there's so many things going on. If I didn't have help, I wouldn't even know what I was doing. I'd probably be still sitting in school right now.

It's great that this planning starts so early, because there are so many aspects to the transition into either post‑secondary or essentially into adulthood, whether that's working, etc. Because there's so many needs, what are some of the resources that we have available for students and families to help navigate all of this?

Ann: Of course, the one I'm here today to discuss is our transition toolkit. What we did at Disability Rights Florida, and this was a labor of love of all of our staff, we have been working on this for years. We took each topic that we felt would be important to somebody who's transitioning into adulthood.

What would you want to know? We don't come with handbooks. What's important? We cover things like your education, we cover employment, accommodations, but we also have very practical things in here, like insurance, healthcare. There's a big transition, believe it or not.

From when you turn 18, you no longer can be covered by your pediatrician, so oftentimes, either at 18 or 21, you're moving to your "adult doctor." You want to make sure all your records transfer with you. It's a good opportunity to get a copy.

I am a proponent of keeping copies of everything, whether you do it in a digital format or old‑fashioned like me in paper binders. It is important to keep a record of your medical so that you have this for your doctors and they can make appropriate medical decisions for you.

We recommend that when you're doing that transition, you interview a doctor who is going to listen to you and somebody that you have a good rapport with, and somebody that you can obviously get an appointment to be able to see. That is another transition.

You're looking at transitioning your healthcare. Oftentimes, you're going off of your parent's insurance onto your health insurance, so health insurance is important. If you're looking for a job, whether that job will offer health insurance or whether you have to get it privately.

These are all very important decision‑making. We have a section on housing. This may be your first place that you're living on your own, knowing your lease and your rights, and reading everything before you sign it.

It's important that we've put in all the little things that, as adults, we tend to take for granted, but when it's come, this is your first time you're going to be purchasing an automobile, or getting car insurance, or social media, all these different things.

We have, soup to nuts, everything in this book that we thought of that would be helpful for individuals to have on hand to help them with that transition, so when you're faced with not only leaving high school, but all of the different adult choices that you're going to have to make.

Maddie: I want to emphasize that, yes, this is made by Disability Rights Florida, but quite literally, anybody can benefit from this toolkit. What's great is that sometimes, you go online and you want to learn about, how am I going to transition my insurance or get my own car?

The information is hard to understand, sometimes on purpose, unfortunately. What Disability Rights Florida has done and a part of that labor of love is to make the language easy to understand, readable, in plain language.

Could you maybe touch on a little bit about that process and how you all have taken complicated information and made it more accessible for people?

Ann: Thanks for asking. We took and looked at the language that we're using. We wanted to make it readable. We didn't want to have a lot of legalese in there. Every time lawyers get involved, we have to throw a bunch of Latin terms in there that no one understands. We really focused on making it readable.

We were fortunate that Youth SHINE, it's a part of Florida Children First, reviewed the entire toolkit for us to make sure that it was readable, that it would keep the interest of youth because this is who our target audience is.

They were able to give input on that on the language, on the design, and it was helpful for us because we want this to be a resource that youth will be interested in, so we needed that youth perspective.

Maddie: That's awesome. It's great to hear that different groups, people with disabilities, youth were involved in the creation of the toolkit to make sure it was accessible for everyone.

Keith: That is really important. You mentioned so many different aspects of transition. As we mentioned, school is just around the corner. This is airing on August 3rd, and so many schools are going to be starting. I know where I live, my kids go to school on the 10th, so it is literally right around the corner.

What are some of the things people should keep in mind at the start of the school year and maybe keep an eye on throughout the school year when it comes to not just transition, but education services for people with disabilities?

Ann: The first thing I recommend to all of our families is pre‑planning. There's a week before school starts where most of the staff are in and they're setting up their rooms and getting their lesson plans ready.

I recommend to our families that you meet with your IEP team, make sure they have a copy of your child's IEP, go over it so that they know on the first day of school what services need to be in place, what related services does the student get speech or occupational therapy?

Everything's in place so when that student gets to the school, it's a smooth transition for them. I recommend doing a pre‑planning meeting. If they're too busy, then trying to get it early in the first month of school.

It's important that everyone be on the plan and everyone know what the student needs in order to be successful, what accommodations are in place, is there a behavior intervention plan, what are the services and supports for the student? When school starts first day, children are supposed to be learning.

Keith: That's a good point. If people are looking for resources, our website at disabilityrightsflorida.org has a whole section on resources about education in general, talking about IEPs, 504 Plans, extended school years, and all those different types of things other than transition that we're talking about.

I don't believe we've mentioned the address to the transition toolkit. That's at transition.disabilityrightsflorida.org. It's like its own separate book online, and it's optimized for mobile. If you're meeting with somebody and you've just got your phone and you're like, "I'm not sure that's right," you can real quick scan through.

It's searchable, it's accessible, and it's handy to have available. Have it loaded up and ready when you meet with those folks that you're going to have to meet with as a parent of an individual with disability, or if you're older and doing it yourself, and tell those resources.

Ann: We have a bonus added to the website that's not in the paper transition toolkit. We have PowerPoints on each of the topics. It gives you some strategies and tips while you're navigating that area.

Maddie: There's so much included in the toolkit that's helpful. One thing I wanted to highlight about something that you just mentioned with the IEP meetings, making the plans, and ensuring that all people that are providing services to the student are knowledgeable about.

Sometimes, those meetings, prepping for them, and ensuring that you get a time to talk with your students, your own teachers, or providers can be a bit overwhelming. On the education transition planning page of the transition toolkit, there's some resources about self‑advocacy and talking about, "This is your plan.

"These are your rights to your education. You have a right to free and appropriate education." Can you talk a little bit about the importance of self‑advocacy for students and how you've included that within the toolkit?

Ann: Great question. We are really wanting to empower our students to drive their own education plan. Our goal is for our students one day to be facilitating their own meetings.

We want them to be aware of what accommodations, what services, and supports are on the plan because ultimately, these students are the ones who are going to be in the classroom and are going to need that it be implemented with fidelity. It's important for the students to be a part of it from the ground level building up.

We want them to be a part of writing their own present levels of performance, because who knows better what their strengths and weaknesses are but the individual themselves. It's also good for them to hear what they need to work on, but also to hear their strengths.

Oftentimes, we focus on what the student needs helping. It tends to be a downer for the child to hear these deficits. When you put that in tandem with their strengths and how their strengths can help them work through these deficits, it's a win‑win situation.

It's important for the students to be part of their own meeting, to drive that meeting, and to talk about, "Are these accommodations what I need? How are we going to level that playing field for me? What's rewarding?"

Oftentimes, we're faced with students who may have some behavioral challenges, and we need to do a behavior intervention plan, and we want to make sure that student buys into that plan. You need to have rewards that are rewarding to the student.

I had a case one time where I had a 16‑year‑old male student and they wanted to offer this individual stickers for when they were acting on‑task behavior. I thought, "Wow, for this individual, he's going to get beat up. 16 years old, he's not going to want Barbie stickers on his desk."

That might have been very reinforcing at an earlier age, but as you're in high school and you want to show you're an adult to your peers, that wasn't exactly the best plan. Having the student in the meeting, the student was able to advocate for themselves. They said they like chips and energy drinks.

They literally developed the plan working around that student completed their day, got their points, and they got to go down and get an energy drink and a bag of chips. That was very reinforcing for the student, so they wanted to work for that.

Whereas, if you were going to put stickers on my desk at 16 years of age, I wouldn't want anyone to see that, and it wouldn't have been something that would have motivated me. It would have actually been like, "I'm not going to behave so you don't point me out and have this kind of thing."

It's important for them to drive their own plan and to know what's motivating for them. Oftentimes, parents have the best intentions, but we worry about our children and we want to put all these guardrails in place that are not necessary, and we end up having the reverse effect and we're enabling our children.

We want to make sure that we're developing a plan to make that child as independent as they can be when they hit the ground running.

Keith: I can honestly see the scenario of a parent and a teacher or other school official arguing back and forth with each other, and the kid is just like, "Anybody remember me? I have thoughts, I have some ideas." I'm sure that happens, unfortunately, a lot.

Again, like you said, it's in best interest. It means well, but you can get caught up in things and forget maybe the most important aspect, which is the student themselves and what are their wants, needs, and interests?

It's a clever example about using things that they like like that to help develop the plan and provide incentives. That's great. Any other specific areas of the toolkit you want to touch on? There's so many amazing things in here.

You talk about assistive technology, and self‑determination, supported decision‑making. There's so many aspects to it that's almost beyond transition. It's almost like an adulting guide, if you will.

Ann: Absolutely. We wanted it to be that kind of thing where you're, "Wait a minute, I have a question, and I may not want to ask my friend. Let me flip to this guide and look if I have something on driver's license, or if I'm wondering about insurance."

We even have information on relationships so that students become aware. Oftentimes, unfortunately, some of our consumers end up being the victim of violence. Is this what a normal relationship looks like? Relationships don't come with handbooks either.

We have resources out there if somebody finds themselves in an abusive relationship. Each section will have resources on places and agencies that help provide services in that area.

Maddie: One of the things I'd love to highlight, youth who are utilizing different sections of this toolkit or are talking about a specific part of the toolkit, a topic.

You've included different, almost like success stories and anecdotes that other people that come to the website who may not feel like they could find use from the website or are nervous about how maybe it can apply to their life, there are some good examples of how this information could be tangibly relevant and useful to someone's life.

That's a great part of it as well. One other thing that I like to flag, I know we talked about plain language earlier, but what's awesome about the transition toolkit is it includes an acronyms list that has, gosh, at least 50‑ish acronyms that you might come across when you're navigating some of these spaces like healthcare, education, work, whatever it might be.

You see all these acronyms across websites and flyers that you might not be familiar with. Disability Rights Florida, we've made a great acronyms list that breaks them down and includes the terms. Those are two additional things I wanted to highlight that will help people and make the toolkit even more usable for them.

Ann: Absolutely. The more and more I get presentations on special education, the more and more I'm asked I talk in an alphabet soup. Everything has acronyms in it. There's behavior intervention plans, we have our BIPs. We have our IEPs, our individual education plan.

We thought it would be so much more helpful and user‑friendly if you had something in the back. I know I've sat through many a conference where people are talking and I'm jotting down notes to ask, "What does this mean? What does this mean?"

There were so many acronyms in education, and it goes on and on with assistive technology, and the different devices, and things like that. It's helpful to have this as a little cheat sheet reference when you're looking through if we refer to something that you may not readily know, in the back of it, you'll have that.

Keith: You mentioned presentations and training, so that's a great segue. Wanted to also mention that you're speaking on the 18th at an event. Do you want to talk about that a little bit and what you're presenting on?

Ann: Yes. I'm excited about that. I have an opportunity to do a continuing legal education presentation with the Florida Youth SHINE folks. We're presenting on the transition toolkit. They're going to give some information that relates to experiences they've had, and we're going to go over the toolkit.

There's a section in here also in the toolkit that addresses specifically youth in foster care. Florida Children First will also be presenting along with the folks from Youth SHINE.

Keith: That's great. We'll have a link to the registration in the show notes if anyone wants to sign up and attend that. It's August 18th at noon. Any other thought, anything else about transition or education you want to close with, or call to actions for parents or students themselves?

Ann: I'm going to also do my little shameless plug. Keep your records. Everything, report cards, progress notes, IEPs, or whether your child is on a 504 Plan, all of that documentation is very important to keep, and any updated psychologicals.

This is all information you'll need when you're moving post‑secondary and if you're looking for any kind of accommodations in college, any training programs, or even employment.

It's very good, and I constantly tell parents, and now for the youth, keep your records, keep a file, whether you do it electronically on a device or you're like me and you have a binder with all of that information in it. It is very important for you to track your own progress, and all decisions need to be based on data.

This way, you're prepared, you review it before you have your meetings, and you're all set. Another thing I want to let students know now is when you're deferring your diploma. If you are on access points, it's very important that you have to tell them, I believe it's May of your junior year, it could have changed to April. I'm not exactly sure.

You want to go on to the Department of Ed's website and make sure that if you want to defer your diploma, meaning you don't want to graduate your senior year and you want to defer for free appropriate public education through your 21st year, you need to make that plan ahead of time so that you're not caught at the end of the school year looking to continue on and you've missed the deferral time.

It's important to plan and have those pre‑planning meetings. Attend your IEP meetings. Don't ever let anyone tell you, "We've got it. We'll send you a copy." Be a part of it, because every decision, every choice made, ultimately, at the end of the day, is going to impact you.

Maddie: That's great. We appreciate you coming on the show to talk about this. I think the toolkit's gonna be useful. We're excited that it's live for this full upcoming school year, and we'll continue to share it on social media, get the word out about the toolkit so that at any point in the school year, at any point during the year, generally, too, people can make good use of it.

Keith: Absolutely. Thanks, Ann, again, for being our guest. We appreciate it.

Ann: Thank you, guys. Thank you so much. You know how excited I am about this, so I greatly appreciate that you're going to showcase it.

Keith: Awesome, we're excited, too. Thanks, Ann, for being on today's episode. This toolkit is such a great resource, and we hope you, our listeners, check it out and share it with a friend.

Maddie: Definitely. We'll have the link to the transition website in our show notes, along with some other good education‑related resources from our website that might be helpful as folks get back to school.

Keith: Like we mentioned earlier before the interview, we will be taking a break for the rest of the month. We'll be back with our next episode in September. Until then, please take a moment to like and subscribe to our show.

Maddie: You can keep up with the podcast and all things DRF on our social media platforms. We are [laughs] literally on all of them, so if you look up Disability Rights Florida, you'll be likely to find us. Finally, for more information and for the episode's transcript, go to disabilityrightsflord.org/podcast.

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Announcer: The You First Podcast is produced by Disability Rights Florida, a not‑for‑profit corporation working to protect and advance the rights of Floridians with disabilities through advocacy and education. If you or a family member has a disability and feel that your rights have been violated in any way, please contact Disability Rights Florida.

You can learn more about the services we provide, explore a vast array of resources on a variety of disability‑related topics, and complete an online intake on our website at disabilityrightsflorida.org. You can also call us at 1‑800‑342‑0823. Thank you for listening to You First ‑‑ the Disability Rights Florida Podcast.