OTS 160: Planning for College Success for Students with Disabilities
- Jayson Davies
- Oct 14, 2024
- 42 min read
Updated: Dec 18, 2024
Click on your preferred podcast player link to listen wherever you enjoy podcasts.
Welcome to the show notes for Episode 160 of the OT Schoolhouse Podcast.
Are you feeling uncertain about how to prepare your students with disabilities for the transition to college?
As OTPs we want to equip students for life beyond the classroom, including their next steps after high school. In this episode, we’ll tackle the challenges that arise when students navigate the vastly different expectations and supports of college life. Annie will share important insights and practical strategies to help us support our students during this huge transition.
Listen to this episode to help empower your students for success beyond high school!
Listen now to learn the following objectives:
Learners will identify how school-based OTPs can support our students in the transition to college process
Learners will identify a variety of services for their students, including assistive technology, employment support, and potential funding options for college, to help students prepare for their future
Learners will understand the importance of fostering self-advocacy in students during their k-12 education
Guests Bios
Annie Tulkin is the Founder and Director of Accessible College, as well as an author and public speaker. She is an expert in the area of college preparation and transition for students with physical disabilities and health conditions. She supports students and families across the country. Annie was the Associate Director of the Academic Resource Center at Georgetown University for nearly 6 years. In that position she supported undergraduate, graduate, and medical students with physical disabilities and health conditions and oversaw academic support services for the entire student body.
She holds a Bachelor's Degree in Secondary Education from DePaul University, a Masters in Special Education from The University of Wisconsin-Madison, and a Certificate in Health Coaching from Georgetown University. Annie was a Peace Corps Volunteer (Mongolia, ‘03-’05) and a Fulbright Fellow (Mongolia, ‘07-’08). She resides in Silver Spring, MD with her husband and daughter.
Quotes
“So the data tells us that 21% of college students report having a disability.”
-Annie Tulkin, MS
“At any institution, somewhere between 10-20% are actually receiving accommodations.”
-Annie Tulkin, MS
“I think that we can encourage students to be a part of those IEP meetings or a part of those 504 meetings.”
-Annie Tulkin, MS
“Sometimes goals don't need to focus around multiplication, addition. They need to focus on real world skills.”
-Jayson Davies, M.A., OTR/L
Resources
Episode Transcript
Expand to view the full episode transcript.
Jayson Davies
Hey there and welcome back. It's great to have you as we discuss and often forgotten side of education, and that is what happens when our students move on from primary education as school based occupational therapy practitioners, we often are so caught up with the here and now of supporting our students, like making sure that we have, you know, functioning IEP goals in place, that we get all our services in that we monitor the all their the progress on their goals and whatnot, and we often forget that our students will have a life beyond high school and their adult transition program. After all, the whole purpose of education is to prepare students for life beyond said education, that is why, in this episode, we are tackling a common challenge that many of us face effectively preparing our students with disabilities for the transition to college and other programs, the expectations and supports available in the college setting and in other settings outside of high school are vastly different from that primary education that they're used to, and this often leaves families, as well as the students themselves, unsure of how to navigate this crucial life change. Unfortunately, most of us don't have the knowledge to support our families with this change when we sit in IEPs or meet with the students and their families otherwise. So to help us unpack this issue and learn how we can best support our students, I'm joined today by Annie Tolkin, the founder and director of accessible College. Annie has extensive expertise in supporting students with physical disabilities and chronic health conditions as they transition to higher education. Over the course of this conversation, Annie shares invaluable insights and practical strategies that we as school based ot practitioners can use to better support our students. In this process, you'll learn about the key differences and accommodations from high school to college, the living skills that best support students transitioning to college, and the importance of fostering self advocacy skills and students before they move on from high school. Annie also generously provides a wealth of resources and guides that you can share with the students and families you work with. So wouldn't that be nice to go to an IEP with actually some resources at our transition plan meetings? Absolutely. Plus, if you're a member of the otschoolhouse com collaborative, you can earn a certificate of completion for listening to this episode. So let's dive in and discover how we can better prepare our students with disabilities for the transition to college. This is sure to be a game changer for how you think about transition planning and the services that you provide for your students.
Amazing Narrator
Hello and welcome to the otschoolhouse com podcast. Your source for school based occupational therapy tips, interviews and professional development. Now to get the conversation started, here is your host, Jayson Davies, class is officially in session.
Jayson Davies
Annie, welcome to the otschoolhouse podcast. How are you doing today?
Annie Tulkin
I'm great. Thanks for having me.
Jayson Davies
Yeah, absolutely. And this is going to be a very different episode, nothing like we've done before, because we've talked a lot about transition services from the school based ot side, like, you know, being in the K 12 setting, but you are in a different setting. You're also not occupational therapist. I'm going to give you a second to talk about that. But yeah, you are kind of on the side where we are aiming for kids to get to at some point right, to be on their K 12 or age 22 IEP services and to college and so yeah, thanks for being here. Excited to talk to you about this.
Annie Tulkin
Yeah, I'm excited to talk too, and just to just a little aside, like I see OTs and PTs and other healthcare providers really as partners in this process and reaching out to families and students to make sure that they have all the resources and tools that they need to successfully transition. So hopefully this will be an informative conversation for your listening folks,
Jayson Davies
yeah, yeah, absolutely. I have no doubt that it will be so let's go ahead and get started. I just want to give you an opportunity to share a little bit about your background and how you got involved with supporting students with disabilities during and in that college transition process.
Annie Tulkin
Sure. So my background is in university disability support right now. I am the founder and director of accessible College, which is an LLC where I provide college transition support and preparation for students with physical disabilities, so wheelchair users mobility device users, ambulatory wheelchair mobility device users, students with sensory impairments, so vision and hearing impairments as well, and then also students with chronic health conditions, which is another sort of big tent term, which might include things like tots, Ehlers, Danlos Syndrome, Crohn's, diabetes, epilepsy, basically anything that might impact a student in the college setting. And I got into this work because I used to be the associate. Director of the Disability Support Office at Georgetown University, which is called the Academic Resource Center. But more broadly, my whole professional career has been in the field of disability, and so I bring that experience as a former university administrator to the work that I do now with students, which is more along the high school transition phase of helping students think through what their needs are going to be, what accommodations they may or may not need in the college setting, and beyond just the academic stuff, thinking about residential, dining, transportation, recreation, sort of the whole scope of living on a college campus and making sure that students are really prepared for that transition. I think some of what we're probably going to talk about today is like, what does that transition actually look like for people? Because it's different. College is different, and I'm sure we'll dive into that. But the other thing I wanted to mention too is that my background is in education. You mentioned I'm not an OT I'm not I am a friend to OTs, and my background is specifically in special education. That's what my master's is in, and secondary education in my undergrad experience. So I come to this as a support provider, as a teacher, as an educator, and the work that I do is sort of akin to coaching. So yeah, so that's me.
Jayson Davies
Awesome. I love it, and I love because we're going to get to talk to you kind of in two separate phases, right? There's that transition period actually getting from high school to college, but then you also have some of that background of once the student is actually on campus in your previous position as Associate Director. So I actually want to start there with the work that you did while on campus, and just kind of give us an overview of what that actually looked like. And I know you were, I believe, like more of a director role there, but I'm sure you had some hands on, or you worked with a lot of people that did have hands on. So what did that look like in that role?
Annie Tulkin
Yeah, I'm chuckling. And I think maybe to sort of like give this a little bit of preface this part of the conversation. So first, there's about 4500 colleges and universities across the United States. Every college has to be technically ADA compliant. Americans with Disabilities Act compliant at most colleges. That means that there's a Disability Support Office or an office or a person that is tasked with providing accommodations for students with qualified disabilities. So in my previous position at Georgetown, the office was called the Academic Resource Center. The offices have different names across the spectrum of universities. So it might be accessibility services, Student Disability Services, Disability Support Services, Student Access Center. They all have different names. So I usually tell people go to the main College website and just put in Disability Services, and it should come up, or you should be able to find it. But I say that to say like, because people don't even know often that those offices sort of exist. And so that is sort of a compliance based piece of what colleges have to provide for students with disabilities, and that's the office that a student would have to connect with and have conversations with when they are seeking accommodations at that university. And as I mentioned before, the accommodations can be might be broader than maybe what they had received in a high school or a K through 12 setting. So in my role there, I did work directly with students, and I chuckled. The reason I was chuckling is because every disability support office is a little bit different. So I often joke that you've seen one Disability Support Office, you've seen one disability support office, so some of them have large staffs and lots of supports that they can offer, and some of them don't. They might be a one, a staff of one, or a staff of two. And just like data point wise, I think it's important to understand that we do, we do know how many students there are. We have a we have a good guesstimate. So the data tells us that 21% of college students report having a disability. Wow, so, yeah, that's a lot of people. Yeah, so, and that includes learning disabilities, it includes mental health conditions, it includes physical disabilities, sensory impairments, chronic health conditions, the whole spectrum, and those are people who have like gone to the office to request accommodations at any institution, somewhere between 10 and 20% are actually receiving accommodations.
Jayson Davies
Okay.
Annie Tulkin
You had a question, though.
Jayson Davies
No, I was just going to kind of compare that, because I know I don't have the most recent, up to date numbers, but when it comes to students with an IEP, I have seen numbers that are much lower than that, on average, somewhere in the 13 to 14% even though, in my own experience, I always the schools that I work at, you know, looking at our numbers, it seemed to be higher than that. It seemed to be closer to that 20% range that you're talking about. So yeah, just kind of comparing that and. It's interesting comparison.
Annie Tulkin
Well. And here's another fascinating piece, right? So there's this whole other portion of students in the K through 12 setting who don't have IEPs aren't maybe receiving services from an OT through the school, who might have a 504 plan, right? And so they are also students that would potentially apply for accommodations in college. But the data that we do have tells us that there's a big drop off as well from students who received accommodations in the K through 12 setting, who go on to college and then for whatever reason, either they don't think they'll need accommodations, they don't know how to request accommodations, whatever the circumstance is they choose not to request accommodations, or they don't know they can request accommodations in the college setting. And so in my role at Georgetown, I was working directly with undergraduate, graduate and medical school students with physical disabilities and chronic health conditions. I was also in charge, because that office was sort of had many roles on campus, but I was also in charge of academic support for students too. So I would meet one on one with students to talk about time management, executive function skills, study skills, things like that. I also oversaw workshops, and I did all of the housing accommodations. So I worked with Residence Life to start to figure out when a student requested a specific accommodation in the housing setting, how we could make a reasonable accommodation to meet their needs. So all of that information feeds into the role I have now, which is working with students prior to going to college. So during, ideally, during the college search process, is what I'm working with them, so that they can start to think through all of these pieces and ask the right questions and do the right investigation to make sure that they're choosing a college that is holistically supportive of their needs.
Jayson Davies
Yeah, and I'm sure you have, like, I mean, you just randomly, you know, throughout 4500 colleges or so, so you obviously know a lot about the different colleges. Before I get into that transition piece, I want to ask you to share a little bit more about one piece. And I remember in my day at USC, there would often be like, I think it was a flyer back then, like email was available, but people are still putting out flyers like, where we could get paid to share our notes and it was going to the accessibility department or something like that, to be shared with a student who might have a disability, you can kind of assume why that might be the case, why a student might need that. But I just want to hear from you, what are some of the challenges that you saw students experiencing, and what were some of the solutions that you were able to come up with?
Annie Tulkin
Yeah, so we'll start with that, but I do want to go back to that note taking piece, because there's a lot to talk about there that relates directly to OTS. So some of the things that students really struggle with is not knowing what the process is for requesting a common accommodations in college, not knowing what types of accommodations they could request, really lacking the self advocacy skills, because it's essential, because it is more hands off in college, parents, guardians do not have a role in the college Accommodations Process. Once a student is 18 or they sign that dotted line and they matriculate, which is, you know, the fancy word for starting college, mom and dad, Guardians don't have a say or a role in that advocacy process. And I think for a lot of students, that's a big shift, and also for a lot of parents, I'm a parent myself. I understand like you, you play a role in your students life. And so that is a huge shift that I think catches a lot of people off guard. The other stuff is the independent living stuff, right? So, like a lot of students, don't really realize or recognize the sort of shadow work that parents and guardians might be doing to support them, like filling their medication, like making their lunch and putting it in their bag, like, you know, folding their laundry and putting it away for them. And once they start to have to figure those processes out, or once they realize, like, Oh my God, there's so much more work to do in a in an adult, quote, unquote, adult life, then they start to unravel a little bit, right? Like they're ill prepared for those independent living pieces. So a lot of the work that I do with students and families is sort of, you know, peeling back the onion and figuring out what, what are the things that we need to start working on while you're still in a supportive environment at home, and how can we make sure that you have the right structure set up for college, even if that structure is like getting someone to help you do some of those things, we need systems right? Because it's better to have a system in place than to just like, go in there and throw your hands up in the air. Oh, yeah. So those are the things that I think like are really challenging for students. The the piece about note taking was a really interesting thing that you brought up, and so were you ever a note taker?
Jayson Davies
No, I never did it. No, I have terrible notes. So no, I Yeah, no, you wouldn't want me taking your notes.
Annie Tulkin
Yeah. So. So this looks a little bit different in college. Now, some colleges still use that process where they have a human another student work as a note taker. Some students get paid. At some universities, they give them a stipend. It looks different every single place, but now a lot of universities are leaning more towards using note taking services, right? Like glean otter AI are the are sort of the big ones, and they might offer that to a student as an accommodation. And I bring that up because a lot of times students maybe don't have the tech skills or haven't used a note taking software before, and so that might be something that could be really good for OTS to sort of be aware of and thinking about. So they're raising that with students that they're working with, you know, well ahead of time, so that that student can start to, like, get used to using that software.
Jayson Davies
Yep. Yeah. I mean, we're using otter AI right now as we speak. So.
Annie Tulkin
Is this an ad for utter AI?
Jayson Davies
We should be right, affiliate marketing. Um, okay, so, so you mentioned some of the challenges, right? Anything from being on campus to also the daily living skills. What are some things, other than note taking, that are kind of maybe just some easy go to fixes or or even not go to easy fixes that that you've helped students to put in place over your years?
Annie Tulkin
Yeah, so because I focus on working with students with physical disabilities and chronic health conditions, there's a lot of unique situations, right? And there's a lot of things that students need that maybe are unpredictable, right? So if they have a condition that has unpredictable flares, there's some planning that can be a little bit tricky, because colleges provide and if people could see me, they'd know I'm going to use air quotes here, reasonable accommodations, what is reasonable, and that's an ADA and Americans with Disabilities Act, sort of definition of accommodations. Reasonable accommodations. What is reasonable sort of varies based on the physical space of the campus, the program that the student is in, the course of study that they're in. So there are a lot of variables the college is supposed to engage with the student in what is known as the interactive process to determine reasonable accommodation. So having conversations to figure out what does the student need in this course, or in this circumstance, which really relies heavily, especially for students with physical disabilities and health conditions, on the student knowing what they need? Because students with physical disabilities, health conditions, sensory impairments, are the smallest part of the population of students who are requesting accommodations in college. So the largest populations are students with learning disabilities and students with mental health conditions. That's where we've seen like the largest growth in terms of students requesting accommodations. And I'm guessing that people listening are thinking like, Ah, I have students with CO occurring conditions, and I do too. I don't know. People don't fit neatly into one box, right? Rarely. So that's just, it's something to consider, if a student is looking at a school and they have a physical disability, chances are, because of the numbers of students who have physical disabilities, that they might be one of a very few amount of students on that campus who has a physical disability. So you know, in terms of working through things, there are some accommodations that might be specific to students with physical disabilities. The bait, the sort of typical academic accommodations are going to be found everywhere, right? So if it's extra time on a test because a student is using a speech to text software, or because they need to take breaks during the exam because of their medical needs or whatever the circumstance might be, the extra time is sort of a typical accommodation on a college setting. Everybody has a every college will have a process for that. Note takers, there will always be a process for that. The things that I think catch some people off guard are things like flexibility and attendance or extensions on assignments, because that's a little bit more determined by each individual professor and sort of what could be done in that classroom. You are guaranteed your K through 12 education. Students are guaranteed that education in college. You're not guaranteed a college education no one. No one is. It's not something that that the government has to provide for you. And so if a professor feels that an accommodation might compromise the goals of the course, the curricular goals, they don't have to provide the accommodation. So generally, if a student has unpredictable flares and they don't know if they're going to be out of class or whatnot, they need to connect with that professor and have an in depth conversation about what it would look like if they needed to miss class, how they could make up the work. So this is where that self advocacy skills, those self advocacy skills, are going to come in really handy, because the student needs to be able to, like, have those types of conversations, and it also does put a burden on the student. To to be able to like, communicate these things, communicate them over and over again. So I want to acknowledge that piece as well, because it's a lot of work to have to consistently be advocating for yourself, and students really need to be prepared for that. The other thing that I think emerges a lot and towards the end of high school, and then parents call me panicked, is that colleges don't provide one on one aids or para educators. That's not a thing in college if a student needs a personal care attendant or someone to assist them with getting things out of their bag, or using the restroom during the day or whatever the situation might be, eating any sort of ADLs activities of daily living. That's ot speak. I just threw that in, you got it. Then they have to hire manage their own personal care, attendance. And that is a huge revelation for a lot of families that have relied on supports from the school system, and it can also be a big financial burden. This is where that navigation and the support of connecting students with state and federal benefits becomes really, really important. And I see a lot of students who are have physical disabilities, are college bound, are ready for college, academically ready for college, but they don't have enough information or connection with some of the state and federal benefits to be able to afford some of these, some of these services that they might need. And that's a real gap that I've seen in this transition process, specifically for students with physical disabilities who also need personal care supports.
Jayson Davies
Yeah, yeah. I can imagine. I mean, I again, thinking back to my college days, I think I almost I knew someone with a physical disability, and he did have someone with him, and we never discussed it. But I think in my head, to some degree I think that the I thought that the college was somehow, you know, helping out with that. And my guess is, I'm totally off on that, it was probably completely all on him and his family and so, yeah, that's definitely very different from being K 12k, through 22 so Yeah, is there any difference between private and public universities and that, or is it all the same? Because they're all covered by Ada, which has the same guidelines, whether you're private or public?
Annie Tulkin
Yeah, the latter. So the last one you said, so if a college receives federal funding, which is almost every college, I think there's like two or three that don't receive federal funding, they also probably aren't accredited institutions, but then they have to provide reasonable accommodations under the ADA. But there are huge differences in the feel of college campuses and the campus cultures and their approach to providing accommodations or being inclusive. So that's a really important factor, I think, for students to consider when they're like, doing that college search process, of like, investigating and looking and seeing, you know, seeing what that college is actually doing for students with disabilities, and how students with disabilities feel about the services that they're receiving on campus.
Jayson Davies
Gotcha. Well, thank you for all that knowledge. That's a new knowledge to me. And I'm sure everyone out there, out there listening, is a lot of new knowledge before we start kind of shifting over to more of that transition, working directly with the student, the parents, as they transition. Is there anything else you want to mention just about what it actually looks like once a student is on campus?
Annie Tulkin
I think, like, practically, and I think, like a lot of people, like school counselors folks, other folks who work in support services in high schools don't often know what happens once you pitch off that kid to the to the college. You're like, that's done. We did it right? And like, we all feel like, great, they're on to the next thing. That's awesome. So when a student with a disability, and this is any disability, if they want to receive accommodations in college, once they commit to that school, they have to provide documentation for that university. Every college has their own documentation guidelines, and I'm going to dispel a myth right now that's going to blow some people's minds. IEPs and 504 plans do not follow a student to college and end of just period, exclamation point and End of conversation. They don't travel with the student. The student can provide those documents as supplementary documentation when they apply for college accommodations, but the college has their own documentation and accommodation process, so for students with learning disabilities, it might be a neuropsych evaluation. So if they had a neuropsych done through their school district, they'd want to get that full copy, the full report, not the abbreviated report they want. The whole shebang and have that ready to go. Most colleges are also asking that that report be with adult scales and done within the last three years. So if you have a student who has a learning disability and they're requesting accommodations on the basis of having a learning disability, you want to look at that documentation with them. Make sure they're up to date. Look at the schools that they're interested in. Look at their documentation guidelines. Those documentation guidelines do vary. It could be three to five years. So every college can create their own documentation guidelines for students with physical disabilities. It's going to be a letter from their health care provider, typically, that outlines what their functional limitations are, what accommodations the provider suggests. You know, what their what the students needs are, and has like a diagnosis. And that might be for many of my clients, it's like multiple letters, you know, from a neurologist, from their you know, from their doctor who treats them for this thing and that thing. So it might be multiple letters. And then for students with mental health conditions, it could be a letter from their counselor, their therapist, their social worker, that has the diagnosis and the functional limitations and the recommendations for accommodations. But again, when a student is in that college search process, they should look at what those things are, housing accommodations are usually separate from academic accommodations. They might go through the same office, but it's usually a different process with different deadlines and things. So the student gets commits, they sign, they say, I'm going to XYZ University. They need to start that process of requesting accommodations at that point, right? So may 1 is like the traditional like college decision deadline. So there might be housing accommodations. If the student uses a wheelchair or has a fatigue related condition, they might need some housing accommodations. Or if they have Crohn's disease, and they're looking at like the bathroom setups and things, or another type of gastrointestinal issue, or if they catheterize, or if they have a bowel routine, or whatever the situation is, we need to be thinking about what those housing needs are. Housing accommodations are usually the first thing that comes up May, June. There are deadlines you don't get in there. You might not get what you need. And so that's yes So, and it catches a lot of people off guard, so the student submits the documentation, starts the process to request accommodations, and then the Disability Support Office staff sets up a meeting with the student. So right off the bat, the student has to be ready to have this conversation. You know, do I know what I need? Do I know what accommodations I'm requesting? What if they ask me questions about why I need this thing? The student needs to be prepared for that. And then once the student gets approved for the accommodation. So let's say they the Disability Support Office says yes to all of the accommodations that the student has requested, the student then either gets a physical letter or they have an online system where they go with their they coordinate their classes, so math, 101 English, 204 and then they can email the professors or bring a letter to the professors that outlines their accommodations. This is different from high school too. No diagnosis gets conveyed to the person who has who gets the accommodation letter. So the student gets to choose, do I want to disclose my accommodation if they have an air disability, if they have an invisible disability, right? Like they can, they can craft the story that they want to tell, and they can, you know, they have more efficacy in that, in that position. But if a student has a visible physical disability, right, they still might want to, like, talk to the professor about what that looks like in that classroom and how that works, but they have to connect with each individual professor to talk about accommodations for that class, and they have to do that every single semester, because you get new professors every semester, right? Yeah, so very different from high school, especially if you're coming from a high school where, like, you know, everybody knows you, and you know you can't go to that system.
Jayson Davies
It really puts the onus on the student and, you know, and in K 12, and I'm sure you'll tell me if this exists at all at the college level, I'm assuming it probably not. In public education, there's a program called Child Find Right? Like districts are required to basically find students who might need supports. Does that exist at the college level at all? Are universities given the directive like, Hey, you actually need to go out and find the students that need support in any way? Or is it just 100% it's up to the student.
Annie Tulkin
100% up to the student.
Jayson Davies
Yeah, that's what I figured.
Annie Tulkin
They're adults, right? So once they turn 18, or they sign that dotted line, they're technically an adult, so it's up to them whether or not they want to choose to request accommodations. And you know, there are barriers for students to requesting accommodations, like if they needed updated documentation, and they can't get to their healthcare provider, or they can't get a new neuro psych or what I mean, there's a lot of situations. Recommendations that occur where students you know either don't know that they could request accommodations, they don't they can't get the documentation. There are things that emerge. Hopefully they're at a university where people are caring and supportive and would support them in figuring it out. But that's not always the case, right? And the student has to know to ask for what they need. And that's often the hardest part, right? Like, you don't know what you don't know. And sometimes students are like, wait, I could just ask for that. Or, like, Wait, there is a person who does that sort of work, or could support me with that they just don't know. And part of that is like, cultural capital, right? Like we're all coming from different backgrounds and experiences, and, you know, some of us have more cultural capital. We know what levers we can pull in order to get something that we want, and some of us don't. And so, you know, it's really important that we're talking to students about like, like Student Services at their university, like, why don't you check out and see what sorts of tutoring programs or supports that they have? Do they have assistive technology? There? Is it in the library, or is it in the disability office? Like, you know, and that's the sort of nitty gritty and and making connections with people on that campus so that they know who they can go to, like, who is your point person? Like, you don't know, if you don't even know what question to ask, Who can you go to? And just like, Yeah, talk through the issue so that they can point you in the right direction, and that's tricky.
Jayson Davies
Yeah, I can imagine. And like, you know, having my background in school based occupational therapy, I'm already starting to think of all the different ways that school based OTPs can can start to kind of, with this knowledge, start to help their, especially their high schoolers, right? Like we've got to start earlier. We've got to start freshman year, or even earlier if we know that a student's interested in college, we've got to start sharing this information with them, especially now that we have it. So I want to get more into that in just a moment. But before I do, I think a good segue is to kind of talk a little bit about what you're doing at accessible college then and when you get involved. When do you begin to get involved? Ideally, of course, I'm sure sometimes it happens a lot later than you wish it would. But when do you start to get involved? And you've already talked a little bit about what that looks like, but ideally, what does that look like?
Annie Tulkin
Yeah, ideally, students and families are connecting with me during junior year of high school.
Jayson Davies
That makes sense. That's the same time they should be looking at colleges, if not earlier. So usually, right?
Annie Tulkin
It's usually about the time where students start to tune in to like, oh yeah, this is the thing. And, and we, you know, and parents are like, let's go on tours or whatever. Or the school starts to, like, talk about it a little bit more. So I provide one on one support direct to students and families. I predominantly work just with the students. I always, you know, can put parents and guardians in on the conversations that they'd like to be but the reason I do it that way is because it's so important that the student starts to wrap their brain around like what the expectations are going to be for them, and so that they're prepared to ask the questions. Because even if they're asking questions of disability support offices, the expectation on the college side is that the students doing the talking, not the parent or guardian, right? And so I work with students to create a list of accommodations, academic, housing, resident, the residential piece, the recreational piece, the dining piece, whatever their needs are, to start to figure out what are the things we're going to be asking for in college, what are the accommodation needs that we might have, and then creating, working with them to create questions for the disability support offices, so that as they're going on tours, they're reaching out to maybe their top couple schools that they're really interested in, and having conversations and doing a vibe check, is what I call it on the disability support offices, because disability support offices will never tell you 100% that they are going to provide a specific accommodation until the student has committed and until they've seen their documentation. So there are some ways that I've uncovered to sort of get more details without getting, you know, get as close to you can as a 200% right? And part of this too, is just the student connecting with those people to see, like, are these people going to be helpers or hinderers, right? So you can see, like, what's that like? Then it's like working on creating documentation. A lot of times, doctors notice, if there's any doctors listening to this, don't know what college accommodations are. They might be well versed in like workplace accommodations, or maybe they've done K 12 accommodations. But College is a different beast. So the housing pieces and thinking through like, what does the dining hall experience look like? And if we need a meal plan exemption because the student is tube fed, how do we ask that? So I help families sort of create language around that, and then once the student commits to the university, I support the students in figuring out, okay, how do we go through the process of actually requesting the accommodations and navigating the. Conversations with the disability support offices. Because a lot of times, like I mentioned before, if the Disability Support Office hasn't had a lot of experience with students with that health condition, or with students who use wheelchairs, they might not sort of understand what's what the student needs or what the student is asking for. And there's some really, you know, interesting examples of this too. So like, I had a student who had muscular dystrophy, and he had gone through most of this process himself and requested housing accommodations, and he called me up. We had our meeting. He was so excited. He was like, I got a single room. It's right next to the community bathroom. It's going to be great, because that that college only had in their first year residence halls, they only had community bathrooms. And I said, Okay, so let's think through this a little bit. So you're going to have a personal care attendant, because you need help with chat, with bathing and toileting. So that person's going to go with you into the community bathroom, with other with other young men, and that woman, that's probably going to be a middle aged woman who's from an agency, right? Like, so I was like, how are you going to feel about that? And then the toileting piece, and how, you know, and how is this? And it dawned the student just had not thought about, like, the logistics, right? Like, what does this actually look like, functionally? So we worked on an appeal where they went back and they said, here are the reasons why this isn't going to work for me, and what else can we do? Ultimately, the university gave the student an apartment and used it as an opportunity to like, retrofit some another space they had on Canvas to make it more accessible for him. Oh, wow, so that he had more space for his PCA and had a private space to do all those other you know, to do all the bathing and toileting and all the things without having to, like, you know, out himself or make himself uncomfortable, you know, with his peers, yeah, but it was, it was interesting to me, because he just hadn't thought about what that would be like, right? So I do a lot of work with families in that regard, and thinking through all those pieces. I also help people hire and come up with job descriptions for personal care attendants. And think about funding streams for that, connecting them with their state's vocational rehabilitation program if they haven't already done that. Thinking about SSI, Supplemental Security Income for funds for, you know, for their their needs, for their housing, eating, PCAs, medical expenses, whatever the things are, yeah. And there are a lot of things.
Jayson Davies
Yeah, and, as you mentioned really quickly, I mean, you don't know what you don't know, right? And, like you just mentioned that that adult with muscular dystrophy, right? Like, you might have spent that entire year in a situation that he would have survived. He would have got through it, but he probably had a much better freshman year in his other placement or the other housing unit that he was able to.
Annie Tulkin
Yeah, yeah, I think. And this is so I actually, I have a partnership with the Muscular Dystrophy Association, and I'm working with they just have a new scholarship that they put out. And I'm working with some of those scholarship recipients, some of whom are current college students, some of whom are just starting college. And one of the things that's sort of emerging in that work, in my work with those students, is that, like a lot of students who have been in college for many years, are having conversations with me and realizing that they could have asked for things, or they could ask for things that they didn't even know they asked for, right? And I was like, this is a really fascinating process, right? Like, so, you know, even people who are in it now who are, like, doing the college thing, like, may not have you don't know all the answers. You know, like, so like having a resource or or someone you can work with who might be able to guide you can be a really helpful tool. I do have a program with the Christopher and Dana Reeve Foundation, and that's open for any student with any type of limb paralysis. And it's a that's a big tent term limb paralysis. So through that project, I've supported students with spina bifida, cerebral palsy, muscular dystrophy, spinal cord injuries, neurological conditions that cause some form of paralysis and more, and those students can work with me for free through the Reeve Foundation for up to three hours. And we could include that, the a link to that in the show notes too, Jason, because that's the space where a lot of folks in schools actually send me students to who then work with you through that, through that program?
Jayson Davies
Great, because really quickly I'll let you continue. But just for any ot out there listening right, like, how often do we sit in an IEP and just think, like, Man, I wish I knew where to refer this parent and student to as they really begin to transition to college. And, you know, Annie could be that person. And it's, it's not that we can't support them beforehand, and we're going to talk about that in just a moment, because I'm sure Annie has a handful of ideas for how we can begin to support them in middle school, high school, even maybe earlier. But for that actual transition piece, Annie can really be helpful. So, yeah.
Annie Tulkin
Yeah, and like, to that end, you know, I again, like I said in the beginning, and I do think, like, we all are partners in this process, right? So it is. It's a team effort, for sure. So the reef Foundation program is really great, and it's free for for students and families. So that's, you know, school districts sometimes worry about, you know, referring people to paid services, but this one's free, so yay. So the other thing, and we'll put this in the show notes too, is that I wrote a guide on navigating the transition to college with paralysis, which was for the REA foundation as well. But it's really good for anybody with any type of mobility impairment, right? So, like, even if you have a student who uses a walker or crutches, or has fatigue related issues. It just has some good like thoughts and things they should be thinking about and considering as they're starting that college search process. So that's a really good resource and tool to and United Spinal put out a wheelchair friendly campuses guide to that's that's a good starting point for folks. So that might be another resource we want to share as well. Absolutely and just like because there might be somebody on here who has a student who is blind or visually impaired who's listening to this, I have a project with the Perkins School for the Blind, and we created a college readiness resource website for students educators and for other professionals and parents that looks at sort of college transition for blind and visually impaired students and students with CO occurring conditions, it's a really great sort of starting point for people who are starting to think about the process of going to college as a student who is blind or visually impaired. So we'll put, we have lots of links that we're going to put in there. Yeah. So, yes, yep.
Jayson Davies
Great. Well, thank you. I do kind of want to get into now, and maybe we don't. We'll do this with the school based occupational therapy practitioner in mind, but I'm sure a lot of these will be relevant to the entire education team as a whole. But what are some of the things that you know a student and their parent and their family come to you? What are some of the things that you kind of hope that maybe you know just in the back of your mind you're like, Man, I hope the student learned something or had access to something while they were in high school, what are you hoping that they had access to or learned?
Annie Tulkin
Self advocacy skills is the big one. And I think like that manifests itself in a couple different ways. I think that we can encourage students to be a part of those IEP meetings, or a part of those 504 meetings. Part of that preparation might be actually having the student think about, well, a read their evaluations, right? So like using some of that time when they're with a school professional to, like, read I it always boggles my mind when a student's like, oh, I never read any. I've never read this IEP. I've never read this neuro psych evaluation, right? Or I don't know, like, what these people have said about me or written about me. And so I think it's like, important for students to be aware of, you know, what's what's being said about them and what's written down, but also, just like having that preparation, so we're there. Maybe the students creating questions, maybe the student is, you know, thinking about things that they think would work better for them, and offering those suggestions, and maybe somebody's guiding them through that process, because that's like the soft skills of learning you know how to talk about what you need. And the same thing sort of manifests itself at home too. Like, is the student able to call the doctor and make a doctor's appointment? Do they have the executive function skills. Do they have a calendar that they keep, whether it's like an assignment notebook or because that that becomes hugely important too, when they move on to college, because they got to keep track of all their stuff by themselves. And for a lot of our students, that's a challenge, right? So, so working with students on on those skills, and then on the other side of things, I would say the independent living skills are huge. And this is where I think, like, occupational therapists are, you know, can be really helpful in some of these systems. But, like, you know, can the student make a basic meal from can they make a peanut butter and jelly sandwich? Right? Like, can they do they have, like, the the functional skills to be able to support themselves as a, as an adult human right ATM use is a is one that, like, comes up all the time. I'm always It blows my mind. How many students have never used an ATM, and because everybody's used to using, like, cash app now and stuff.
Jayson Davies
That's what I was saying. Are people really Using ATM still that much like, I feel like now a lot of campuses have gone completely cashless, but.
Annie Tulkin
Yeah, it just depends, right? But there's some things you need. There's still some things you need to cash for, right? Like, some people have never even been inside a bank, yeah. But so there's a lot of just, like, basic skills, grocery shopping, orientation and mobility skills, right? Like, did they know how to. And on a bus independently, right? Like, public using public transportation is one that comes up a lot, because oftentimes, like, students have been supported in getting from their house onto a school bus to the school getting off the school bus. But like, functionally, how does that look when someone is an adult and the expectation is that they're getting on themselves right, or even even with support, but, you know, relatively independently, and how are we setting them up for success to, like, guide them through that process, right?
Jayson Davies
Yeah, no, yeah. I just want to say just so you know, I know this is asynchronous. People are listening to the six weeks later, but every ot right now. OT practitioner, OTA, everyone's nodding their head along with you right now. These are things that that we stress. And honestly, to some degree, we get shot down when we say, hey, we need to work on ADLs. Here's why. And I hope every ot practitioner right now is like listening and saying, hey, I want to send this, like this segment of the show, to my, you know, principal or assistant principal, or director of special education or something, because, like, the whole purpose, and we said this before on the podcast, the whole purpose of K 12 education is to, you know, produce adults that can function in the world, whether that be college, a job, whatever it might Be. And sometimes goals don't need to focus around multiplication, addition. They need to focus on real world skills, like, as you mentioned, using an ATM, being able to be independent in a housing unit and whatnot. Those are all very important that, that we need to address. So yeah.
Annie Tulkin
Yeah, I rarely do multiplication, but I get on lots of public busses. I can tell everybody that. So the other thing too is like, I created a course called preparing students with physical disabilities and chronic health conditions for college. I created it with healthcare providers, parents, educators, anybody who supports students with physical disabilities or health conditions in mind. And it has, it's a multi module course, so people who take it can go through it and start to think about specific students that they're working with, and use those tools to support those students. Right? So it has a module on Independent Living, but it also has modules on like connecting with the Disability Support Office, engaging in the college search hiring a personal care attendant. So there's, there are a lot of skills there that would be really valuable for for families and for educators and OTs and PTs and other support providers to have if you're working with students. So people can go to my website and check that out too. Absolutely. That might be, that might be helpful. But there's something else that you said, Jason, which I think is really important, because I don't think a lot of people realize this. The ADA also applies to the employment setting. So, so you mentioned, like, the purpose of K through 12 education, and like, you know, and CR in creating functioning adults, and whether post secondary. Their post secondary route looks like college, community college, a certificate program, a supported employment programs, employment period, vocational training, whatever it looks like. Students with disabilities can request accommodations in the in the workplace setting. There's a great resource for this. It's called Jan, The Job Accommodation Network, and you guys can Google that up, and they have a whole sort of spot on their website where you can look at specific disabilities and then types of accommodations that a person might need. There's guides for people with disabilities who are requesting accommodations. So that's just another good resource for people to know about.
Jayson Davies
Absolutely, absolutely. Thanks for sharing that I asked you in my previous or a few questions ago, right? Like, what do you hope that students come to you with, and you said, executive functioning, some ADL skills. But I want to think now as a school based ot practitioner or teacher, whatever it might be, you're sitting in an IEP, and the students there, the parents there, and say, Hey, I really want to go to college. My goal is to go to college. We're talking about a freshman, sophomore, maybe a junior. What should we speak up and say, as I know, it's obviously independent for or it's going to be very different, depending on the student. But should we start to at that point cue them in on, hey, things are different at the college, or, Hey, make sure you take your IEP to the college. Or, I guess, kind of, what should we be telling parents, if anything.
Annie Tulkin
I think part of it is preparing students and families for the fact that they may not get the same accommodations in college, right? So services and supports are not a part of college accommodations. So, like, there is no so an OT would be considered an auxiliary certain a service in the college setting, just like a personal care attendant or a para educator. So there, there is that does. Exist. You won't get OT, you won't get PT, you won't get speech and language support that doesn't, that doesn't exist in the college setting. So you lose all of the services that you may have in the K through 12 setting in an IEP process. So that is important for people to understand. And I would also say, like, if an OT is there, and we're thinking about, like, what are we advocating for? Assistive technology is one of the biggest things, things that can help a student increase their independence, right? So like these note taking softwares, other sort of daily living supports that the student might need, or assistive tech that they might need. And I think a lot of times, people don't realize that state vocational rehabilitation program has has a program called pre ETS. Students who are age 14 are eligible for pre ETS services, pre ETS, pre ETS, that's what it is in every state. So, okay, just backing up, because people might not even realize this, every state has a vocational rehabilitation program. Every state has a different name for it. It might be Department of Rehabilitation Services. It might be access VR. It might be VR services. So you go to your state, you know, type in your state name, put in vocational rehabilitation. It's a federal program, and then the states get money from there, and then they are supposed to do outreach specifically to people with disabilities. A lot of people associate VR services with students with intellectual and developmental disabilities and autism spectrum disorders or more, quote, unquote, significant disabilities. However, state VR programs can also be a great support for students with physical disabilities or for more significant medical conditions where they're having a lot of challenges in the school setting. And VR has access to assistive technology services, employment services, career support services, so it unlocks sort of more resources. Most public schools have a VR person who might oversee, like a number of schools in that district as their connection to that school or to that school district. So if this is new, if you're listening to this and being like, who? Who is that? What? Yeah, look up vocational rehabilitation. Look at pre ETS, which is their youth employment, youth employment services, because vocational rehabilitation, the sole purpose is getting people with disabilities into the employment setting. Post secondary education, college, community college certificates might be a piece of that puzzle, and in many cases, they'll actually provide funding for college or and books and assistive tech and things like that. And I think, like people don't know about so the more people that know about this, the better awful we're all going to be.
Jayson Davies
Yeah, you are giving our work cut out for all the resources we're going to have to go find. But we will get all these resources. We'll get them up on on the web with this episode, because, yeah, nothing else. All the resources you have shared have just been fantastic. So thank you. We appreciate that. I'm glad. All right, well, we'll wrap this up here, but I want to ask you, because I'm sure there's some people that are listening and they're like, I love my school based occupational therapy job, but I also would love to be in a position on a college campus, working maybe in this arena. And so any advice for ot practitioners who might want to be more involved in supporting the college transition process for the students they work with, or or maybe once kids are even on campus, any advice for where they might whether it be look for jobs or maybe just yeah, how do we get into that field?
Annie Tulkin
I would say that a good way for school based people to connect with the higher ed people is to actually reach out to the Disability Support Office at the college or university that's closest to you and see if they would come to your school and talk to students about, like, what the process is for requesting accommodations. A lot of colleges do that, community colleges, you know, four year institutions, whatever, a lot of them are trying because they on the college side, people want to get to the students more easily, too, so that they're they don't have as much work to do with the students when they once they get there. So creating those connections is a really important thing, you know, I would also say that, like, if someone was trying to break into the higher ed field, you know, I think that for ot to continue ot work might be a little bit challenging, because, like I said, colleges don't typically offer those services. However, there are colleges that have ot programs, right? The OT training programs and things like that. So you know they might be looking for resource sites or placement sites too. So like creating those connections too, so that you know you can help mentor college gets know you, you maybe get a job back at the college, whatever. So there's. There's, there's some inroads there as well, you know. And I think, like there's, there's space for innovation here too. There are some programs that like specifically work adaptive sports, programs in particular, that specifically work with students with physical disabilities, and have summer college programs where they are on a college campus, and they're preparing students for the independent living pieces and things like that. So I think there's about 22 colleges across the United States that have adaptive sports programs, mostly wheelchair basketball. So if you look in the United Spinal guide that we're going to link to, you'll see a lot of those schools. Or if you just Google it, you can find it too. Move United is another great resource for finding adaptive sports programs too, but that might be another sort of inroad for someone to break into the higher ed side of things.
Jayson Davies
Absolutely great. Well, Annie, it's been a pleasure. Thank you so much for all your knowledge. The resources, I think this is really going to help the OT practitioners better support, especially their high school students, because they now have a better idea of what some of those expectations might be beyond high school, whether it's college or as we talked a little bit near the end, you know work, what it might what it might look like at work. So thank you so much. We really appreciate it, and one last time, remind everyone where they can learn more about you and your programs.
Annie Tulkin
Yeah, folks can find me@accessiblecollege.com I'm also I have Facebook, Instagram, LinkedIn. I also have a Facebook group. So if you go to the accessible college Facebook page, you can learn about the Facebook group, which is open to healthcare providers, parents, families, students, anybody who wants to talk about physical, physical disabilities, chronic health and mental health is welcome in the group, and you can reach out to me directly to my email is Annie a n, n, i e@accessiblecollege.com and I look forward to hearing from some folks.
Jayson Davies
Absolutely. And we'll be sure to post all the resources over at otschoolhouse com, slash episode 160, so that is going to wrap us up here at the otschoolhouse com, thank you so much, Annie. We really appreciate your time and your knowledge.
Annie Tulkin
Thank you!
Jayson Davies
and there you have it. I hope this conversation with Annie Tolkin from accessible College has provided you with invaluable insights and actionable strategies to better support your students in transitioning to higher education. Remember the takeaways are be aware of the differences in accommodations and supports available in college versus high school. Focus on developing independent living skills like meal preparation, money management and transportation, some of the things that we're often asked not to focus on while working with our students in elementary, middle and high school, and finally, prioritize building strong self advocacy skills in your students. This is true for any student. We need to be able to have students who self advocate for themselves beyond school. Also don't forget to check out all the fantastic resources Annie mentioned. We've included those in the show notes at otschoolhouse com, slash Episode 160 and again, if you're a member of the otschoolhouse com collaborative, you can now earn your certificate of completion for listening to this episode, just log into the community and head to the podcast CEUs tab to take a short quiz and get your certificate. And if you're not a member yet, head on over to otschoolhouse com slash collab to learn more about joining the otschoolhouse com Collaborative for school based ot practitioners. Thank you for tuning in, and we'll see you next time on the otschoolhouse podcast, take care.
Amazing Narrator
Thank you for listening to the otschoolhouse podcast, for more ways to help you and your students succeed right now, head on over to otschoolhouse.com Until next time class is dismissed.
Click on the file below to download the transcript to your device.
Be sure to subscribe to the OT Schoolhouse email list & get access to our free downloads of Gray-Space paper and the Occupational Profile for school-based OTs. Subscribe now!
Thanks for visiting the podcast show notes! If you enjoyed this episode, be sure to subscribe on Apple Podcasts, Google Podcast, Spotify, or wherever you listen to podcasts.
