"Special Education Advocacy: (Pt. 2) Love for Technology, Nursing, and Self-Determination with Jeanette Lange" (Pt. 2)

Fast 15 Podcast Episode 2: The Role of Self-Advocacy in the IDD Community with Jeanette Lange - Part 2

📍 Hello, listeners! We're diving back into our conversation with Jeanette Lange, picking up from where we left off in our last episode. Join us as we explore crucial aspects of self-advocacy and healthcare decision-making in the IDD community.

Discussion Highlights:
In this episode, Jeanette discusses the importance of introducing technology and communication tools to individuals with IDD based on their readiness. She shares insights into Sam's journey, starting from using an iPad to navigating high-tech applications for adult life. The conversation emphasizes the significance of teaching self-advocacy and self-determination through functional academics, gradually incorporating technology as individuals progress.

The Transition Portfolio:
Jeanette introduces the Transition Portfolio, a comprehensive tool for individuals with disabilities and their families. She discusses its role in helping young adults plan for life after high school, emphasizing self-determination and the importance of ongoing updates.

The Role of School Nurses:
Jeanette advocates for greater involvement of school nurses in the IEP process and emphasizes the need for additional education and support for these professionals. The discussion acknowledges the vital role school nurses play in supporting individuals with IDD and their families.

The Future of Healthcare for IDD Individuals:
Looking to the future, Jeanette shares insights from her fellowship and envisions a healthcare system where professionals across various fields receive proper education to support individuals with IDD. The goal is to ensure that healthcare decisions are made collaboratively, considering the unique needs of each individual.

Closing Segment:
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Thank you for joining us on this insightful journey. Stay tuned for more impactful conversations, and don't forget to explore The Functional Academics Program at www.sdesworks.com. Until next time, this is the FAST 15 Podcast, transforming special education in just 15 minutes!

Transcript

Speaker 1: 0:00

Hello listeners, we are picking up from where we left off in our last episode of the Fast 15 with Jeanette Lang. This is part two of an intriguing conversation about the role of self-advocacy in the IDD community and the crossover of special education and personal decision making in healthcare. Let's dive back into our conversation with Jeanette. Let me ask you this at what stage would you have wanted Sam to start learning the skills that you know he now needs, as he's in his 20s?

Speaker 2: 0:35

I think with him. I think he was about 14, 14 or 15. I think before then he really he used an iPad. He liked to watch a lot of videos on it. So it's all what they're ready for, like at that point.

Speaker 2: 0:47

He liked to make videos Like he didn't what's and it's all. I wouldn't let my typical 14 year old go on just things that he wanted to do on the internet. So you have to be able to set your parameters and what do you want him to watch on YouTube? He had no social media. It was 14, he was starting to get interested, 16, he got a phone and it was an iPhone and from there we had to. You always have to make sure you monitor and see, because there's people send you stuff or you go into the wrong website. We've all done it and you don't want anyone to just knowing when they're ready for the different tools, the different applications and things like that.

Speaker 1: 1:24

I think communication and self-advocacy and self-determination there's so many different ways that you can start teaching those things through functional academics and then introduce those tech tools as they're ready for them Just typing, just being able to use your iPad.

Speaker 2: 1:42

Some people aren't very verbal but there's typed text to talk on a phone. So if you have communication issues, just knowing, or speech to text, if you're not a good typist, then you can do your job.

Speaker 2: 1:52

So there's technology to help. Then there's more technology. I think as you become more of an adult Like he's, he, during the adult transition, really learned to use his calendars on his phone to set reminder apps, to set timers. He learned to navigate the bus system, and he did that through technology, because you really can't find a map anywhere, no, no, so you need to be able to access those things.

Speaker 2: 2:17

You can't. You know if you need to. You know if you're setting up Dial-A-Ride or you want to access the transportation, you need to be able to use that. And they have all these social networks and people that follow them and you still have to teach them about safety. And Sam said something to me the other day. He's do you know what catfishing is? I was like like catfishing, catch a cat. And he's oh, that's when somebody online pretends to be somebody else. So I didn't even think about that. He's has learned it through practice and through embedded his in curriculum in his curriculum. Like this is how you're safe online Show us how you're safe.

Speaker 1: 2:55

I know my transition portfolio that I will link to in the show notes, but we I really wanted to cover that. That's the, that's the program that I authored and having a section for okay, how are you safe online? What would you say if you got a text that said this would how would you respond? How do you do a password? How do you a lot of those practical skills that really are a part of the whole transition process, who is safe, who isn't safe, that whole circle of relationships to so important to know. You were also so when you're talking about the low tech. Sam was coming in to our group with some low tech, some schedules and some different things. Can you describe from his class that that he's currently in some of those, some of those tools that he's using?

Speaker 2: 3:45

Sure. So I remember when we first started in school he had a physical calendar because he really needed those reminders to look at. And then, as he got better on the computer and learned to use his phone he lives by his iPhone he started learning to upload apps onto there. I know there's a reminder, there's multiple reminder apps that can you know? Anything you can think of you can put it on there. He's good with QR codes. He likes to, and that wasn't around originally. He had to learn how to take the picture, the QR code. You can order stuff through that, you can look at menus, and so he uses a lot of reminders. He uses his calendar.

Speaker 2: 4:22

The other thing we taught him was obviously we put all of his physician doctors in there his dentist, and so we now, when we go, I make him make his appointment. Oh good, yeah, so he's learning that. So he uses his phone. There's probably so much stuff in there he uses that. I don't know, but when he went into ATI he was basically hand in paper by the time he left ATI. He was totally utilizing technology. To how to like LinkedIn, he put on his phone to look for jobs. He's not a TikToker, but he likes Facebook, and so we had to teach him what goes on Facebook and what doesn't, because one day he put all these people's phone numbers on there that he had written down.

Speaker 2: 5:03

And then I was like that's private information, and he's like, oh my gosh, I'm like you have to take that off. And that's when we learned about private information and we're teaching them the Lyft app right now. Or just to learn how to get around the dial ride and all that stuff you can put on there, anything you can think of through your finances, your portal, your patient portal. I had to teach him about his patient portal. How do you get your health information? So lots of reminders, a lot of different apps in there just to help them throughout the day. There's ones for if you're having anxiety, like deep breathing and soft music. There's ones for that. Basically anything you can think of. There are apps out there to help support people through their day.

Speaker 1: 5:47

And I love how he's able to tell a story right. He is so good. I'm gonna link one of his videos in the show notes as well, just because he's so fun to watch and listen to and people need to know about Sam. But he's really got the technology and the calendars and all of that down and I think that does come from a lot of the curriculum that he got to go through.

Speaker 2: 6:14

We use your transition portfolio. That's what we looked at At the time. I don't think you had written it yet. I think when we first had him, you had started writing it and you used some of it. But then you gave us a book and it starts with who am I and my health literacy, and a parent can use it, or the individual can use it, or a caregiver like. It's not something that you do in a day, right, you could take a few years to finish the whole thing.

Speaker 1: 6:41

It could be done really, if you're really on it and do a lot of work in it for a concentrated period of time, like maybe in a class or something, you could do it in a semester pretty well. But it's really designed for a multi-year approach and to be changed and updated over time. But yeah, starting out with what the big dream is for life after high school or goes into self-determination, Like if you don't think about it and talk about it, how can you dream it?

Speaker 2: 7:10

I think it's a great curriculum or starting place for a parent, for a caregiver, for a para, for just people to look at If you're not sure where your kiddo's gonna be and you need to start somewhere it's a great place to start, because there's lots of things I didn't think of and there's a lot of great things in there. I know you have some photography things for kids that maybe aren't that verbal. Draw me a picture, take a picture cut it out, paste it.

Speaker 2: 7:35

So it's. You don't have to be all verbal that or even know like.

Speaker 1: 7:40

You can do parts of it, and as your child Develops more and can think more about what their vision is like, you can go back to it and really the whole idea is that the young adult with hopefully not being Too supportive if support is needed, absolutely, somebody can be a scribe or somebody can walk through a parent or caregiver, walk through it, but the idea is it's their voice, what they want, and being able to take that to an adult service agency, to DVR, to DDA, to home environment where they're gonna be living and that's why Technology right now is one of the big things that are being looked at, because you have to look at user and capability, and I know the arc and the FCC and some other Places are looking into how do we make sure everyone has technology?

Speaker 2: 8:32

How do we pay for the technology? What is technology? Because that is really changed, what supports our people? And we know during COVID, as people lost their caregivers and Couldn't access transportation, a lot of people with disabilities were left behind. They really didn't have the support and a lot of things happened and Through that, some of what they learned was the QR codes, the smart homes, siri for people that are blind, the apps on even your Kindle to read to you. Once they had all these things set up for them, they were, they could be independent, like, but you have to teach it first. Right? This is your transition.

Speaker 1: 9:09

This is your foundational skills.

Speaker 2: 9:10

Foundational skills. You have to. This is why it's so important. You have to teach it, you have to make sure they learn it, they have to practice it, and then they have to be able to Troubleshoot and have someone there for them. So what do you?

Speaker 1: 9:22

see for the hope for the future, with all that you're studying Through this fellowship, that you're doing your thesis, and where do you think things are heading? What's ideal, where do we need to be?

Speaker 2: 9:35

I there's about 25 other women in this group all over summer outside the US, we're working with nurses in Ireland that have really that have embedded the IDD curriculum into teaching. Like there's nurses that just go and learn About the disability community and that's all they support, so they have. So we're trying to model this program. We're trying to make sure that if you're a doctor, if you're a pharmacist, if you're a dentist, if you're a nurse, you're getting the education you need to support young adults in the with disability, in the hospital setting, in the community setting, and understand their unique needs and set up Health care that meets them where they are all all about. Nothing about me without me, I think I said that. Nothing about me without me, I think, is the new thing. Like they and we have more self advocates coming out and saying what they need, like we have Don't talk about me.

Speaker 1: 10:32

Yeah, I might have said that wrong.

Speaker 2: 10:34

I know there's a catchphrase that if you're gonna, if you're gonna make these Decisions, that I want to be a part of it. And I see that. Cuz Sam, he's super verbal, but he wasn't always right. At one time he was non-verbal. He signed and use packs and then throughout the years, even at nine compared to 12, compared to how you see him now he could talk way more than I could and hold a conversation and but not everybody with a disability is that verbal right.

Speaker 2: 10:59

So we have to make sure all the people are supported wherever they are, however they're impacted. So even Sam can say what he needs, but he doesn't speak for all people with autism, right, he's just. Everybody's voice needs to be heard. So that's my hope is we're all doing everyone's doing different projects. Some people are looking at curriculum, some people are looking Supporting, having more support from the school nurses with families. It was my next question.

Speaker 1: 11:27

Which I told yeah, it is. How are nurse school nurses doing with our IDD population?

Speaker 2: 11:35

I think they're getting better but I think, like everyone, they don't get. They don't get the education. I think it's a specialty and I think they see so many. They see kids with diabetes and they see. They see kids with a school nurse. They're amazing. They see so many things Like in a day.

Speaker 2: 11:55

they have a bleeder, a vomitor, a physical yeah, somebody who's physically hurt, someone coming who's mental health like they have to have a hat that does it all. So I think we need more education and support and really I think school nurses need to be more involved in the IEP process. I don't know if we, as special educators, always include them as much as maybe didn't do speech, but they have a huge impact. They really do?

Speaker 1: 12:22

They need to know the protocols that we have in place for our students. We're supporting and serving and we need to be able to have those conversations before an incident happens. And I totally agree with you School nurses are so amazing and so knowledgeable and also overloaded, right. Yes, oh yeah, there's not enough. There's not enough.

Speaker 2: 12:47

Some schools don't have any and they're really important because then you have. If you do have an emergency, you might have the teacher or the staff in the office now trying to give meds or be that buffer person. And so school nurses are so important and I really think they need the education just as much for behavior, for supporting, for understanding and then to be that link, because a lot of families I know. I knew our school nurse really well and she has seen Sam through when elementary and then was his high school Jean.

Speaker 1: 13:22

I don't want to say names, but Jean knows who she is. Love Jean.

Speaker 2: 13:26

And she was amazing. There were times Sam went to her just because he wanted to escape class and you have to be able to recognize that he escaping because something happened or he really have a tummy ache.

Speaker 1: 13:38

Jean's a trusted adult who is so compassionate and available and a great relationship and a part of the IEP team right, very important role that she played, and so I totally agree with you Having a student as young as possible coming to the IEP team, coming to the table, having the school nurse there and all the other players and I know time is, we're stretched so thin.

Speaker 2: 14:06

And you guys are amazing.

Speaker 1: 14:07

Oh my God, you guys are amazing and trying to find in the time to do that, but when it happens it's so powerful and those are the things that really teach our young adults. Look self-advocacy at the table to say what you want and need, not just in your education, but in your healthcare as well.

Speaker 2: 14:24

Absolutely and I think their role especially. And I think parents really trust school nurse not that they don't, they trust everyone, but I think school nurses too are very trustworthy and families tend to go to them for their information. So if they're loaded with really great information they can help those families access social security or if they're having issues where they need OT or PT or supports outside of school. A lot of times they're the ones that know about or given the information about the ARC of Snohomish or King County or I've always would send and I think I probably still send you stuff today of community gatherings and remember we did the whole thing about social security where the school nurse, if they have the correct information and they have the correct support write a letter to transition at 18, or help them, as you're gonna be an adult now and this is your health.

Speaker 1: 15:15

This is because health is just an important thing to, and so to make sure so personal and people are so empowered when they have a good handle on people aren't doing something to me. I'm participating in my own health care decision and having the personal Commit or the personal investment and then the agency to be able to make decisions for yourself.

Speaker 2: 15:36

Absolutely, and I think that's one part that parents Tend to take care of their children's health care for much. For longer we do, but I think the earlier we start people on that health care journey and understanding their own diagnosis, what that entails. If you have a seizure disorder, you would know about your meds. If you were diabetic, you, what do you need to eat? Exactly how do you stay healthy?

Speaker 2: 16:00

Exercise mental health is a big one. We need to talk about that and make sure people understand what they have or where to get help. And I don't think our kids always know that, because there's always something else we're trying to do during the day. Right, we're just trying to get through with learning.

Speaker 1: 16:15

Yeah, there's so much coming at us all the time, and that's one thing you can you can control is your own health. Yes, yeah, and that's empowering, yes very much. I just want to thank you so much for taking the time to come in. You have a wealth of Information and knowledge and understanding, experience and and personal commitment and and I just love talking to you- Thank you.

Speaker 2: 16:38

I'm so glad that we have maintained this relationship and you've gotten to see Sam grow up and his friends and just that we're doing this and talking. This is amazing. So thank you again for having me. You're amazing.

Speaker 1: 16:50

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