Podcast: Annie Tulkin: Accessible College

In this episode, Annie Tulkin, the founder of Accessible College, and I discuss the world of college transition support for students with disabilities. Don’t miss this insightful conversation that sheds light on the path to college success for all students. Follow Annie Tulkin on LinkedInFacebook, or Instagram, and visit her website here.

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TRANSCRIPT

Annie Tulkin: And so what is reasonable can really vary based on place and space and program. And so accommodations that a student may have had in the high school setting may not translate directly to the college setting.

Sheila Akbar: Hello, welcome back. Today I get to chat with Annie Tulkin, who is an expert in disability transition to college. And that is a really broad term. It includes working with students who may have physical disabilities or mobility issues, who may have learning challenges, who may have chronic health conditions, and just helping them understand how to evaluate whether a college can meet their needs, and how to communicate with that college about what those needs are, I can tell you from working with just a handful of students who fall into these categories, this work is so needed and so important and can give a student and their family, so much peace of mind and confidence that, you know, hey, I can go off to college and live on my own and still have the things that I need in order to be successful and to live, you know, a somewhat normal life. So I was really excited to have her on to talk about the work that she does, and the kinds of things that families should be thinking about if one of these conditions may apply to your student. So take a listen. Annie, thank you so much for joining us today.

Annie Tulkin: Yeah, I’m so glad to be here, Sheila.

Sheila Akbar: Well, I’m really excited for this conversation, because I think the area you focus in is so important. But it’s also so hard to find good information around. And so I’m really excited for you to tell us about the work that you do and the path that took you there, because I think people will find it really valuable. So let’s start there. Tell us what you do, and then we’ll back up.

Annie Tulkin: Sure. So through my business Accessible College, I provide college transition support and preparation for students with physical disabilities. And that is a big tent term. So that could be students with mobility impairments. Students who use wheelchairs, or mobility devices, students with sensory impairments, so blindness, visual impairments, hearing impairments. And I also support students with chronic health conditions as well, which is also a big tent term. So I have a lot of clients who have conditions like Ehlers Danlos Syndrome, pots, autoimmune disorders, Crohn’s disease, diabetes, epilepsy, and lots of other things too. And many of the students I support also have co occurring mental health conditions as well. And I got into this work, my background is in disability support. So I used to be the associate director at Georgetown University’s Disability Support Office, which is called the Academic Resource Center. And there I work specifically with students with physical disabilities and chronic health conditions, undergraduate, graduate and medical school students. And one of the things that really emerged for me when I was working there was that there were all of these students who are coming into Georgetown, who didn’t really know what types of accommodations they could request, they hadn’t really thought about independent living or continuity of care. And so I now use that content and information that I had that former life as a university administrator, to inform the practice that I have with students now who are engaging in the college search, maybe thinking through their needs, starting to explore what the options and opportunities might be. And the reason I do this is because every college is a little bit different in the types of disability supports that they provide and the care in which they provide those supports. So it’s really important that if the student has a medical needs or has a physical disability that students and families are thinking on the front end about what that’s going to look like on the specific campus that the student is interested in. And so the work that I do is sort of a disability transition, support professional, guiding students and families and thinking through those pieces and helping them identify questions for disability support offices and thinking through those pieces. So I often work alongside independent educational consultants like you, and high school counselors as well. And I sometimes work alongside health care providers like occupational therapists, physical therapists who have clients that need the type of support that I provide.

Sheila Akbar: Thank you, and I think it’s so interesting that you said there, there are students who get to or who got to Georgetown, not knowing what accommodations they could have. I probably because I deal with, with people a little bit more upstream of that, I’m getting calls from people who say, my student is legally blind, or has this physical challenge. We don’t even know if college is an option for them. Because of this. I used to do these presentations for local special education advocacy groups. And a lot of those parents are saying, well, college is just off the table. Because there’s no way my son or daughter could go live independently in a place where we’re not there to do all of these things and make all of these accommodations. So I kind of want to start there with the removal of that as a barrier, because universities by law have to provide accessible facilities. Right. But we know I see you smirking. We know they all do that and, you know, varying degrees. So can we talk a little bit about that? Like what universities? What What kind of basic standards can you expect from university? And where does it really vary?

Annie Tulkin: Sure. So every college university that receives federal funding, which is pretty much all of them, has to comply with the ADEA, the Americans with Disabilities Act, the ADEA is a technical compliance standard, right. So there are physical aspects to that, right. So it might be like having a ramp into a building or blue push buttons to open doors. And then there are sort of programmatic academic accommodations as well that students might need to like extra time on exams or electronic copies of materials, kind of depending on the student’s condition or disability and the limitations that that student has. But the ADEA provides for and since people can’t see me, I’m using air quotes, reasonable accommodations. And so what is reasonable can really vary based on place and space and program. And so accommodations that a student may have had in the high school setting may not translate directly to the college setting. Additionally, if a student wants to live on a college campus, there are other considerations around like housing accommodations, independent living and continuity of care, colleges don’t provide services. So if a student had a one on one para educator or a support aide in their high school setting, that’s not something that a college provides. And I think a lot of families aren’t aware of that legal transition from ide a the Individuals with Disabilities Education Act, which is the law that governs the K through 12, setting, to the ADEA, the Americans with Disabilities Act and the notion of reasonable accommodations. But to your point around like families thinking about, you know, how can my student navigate living independently? I think, you know, one of the things that a lot of families do is sit down with someone like me and talk through like, what are the options, opportunities and possibilities? Can we still build with the students so that they can live? You know, mostly independently, can we automate some of the things that they might need to have in place like medications. And the other thing, a lot of the students that I support, especially students who have more significant mobility impairments, end up hiring personal care attendants to support them with activities of daily living, like bathing, dressing, you know, eating medication management, when they live in a college campus, it’s not a huge part of the population of students who are going on to live in a college campus. But it’s, it’s definitely a space and area that’s under discussed. And it exists. And I think it’s important for people to know that this does exist. And you gave the example of a student who’s legally blind. And actually last year, I worked on a college readiness resource site with the Perkins School for the Blind, that has resources for students, for parents and for educators focused on identifying what are the skills that a student is going to need to have in place in order to matriculate to college in order to go to college and be successful in college. And that resource center which we can put a link to, I guess when we when we put the podcast out would be great for any student with a any type of disability to look at and any family member or guardian or teacher who’s listening to this, because it just gives you a sense of what the student needs to have in terms of self advocacy skills, and other types of, you know, technical skills to have in place. But yeah, I mean, this is a space where I think a lot of families are deterred by the scariness of, you know, the students living independently. And I think it’s important for people to know that students can do this, and they can be successful, but they have to do their research upfront.

Sheila Akbar: So tell us about that research. Where do people start? When they’re starting to think about college? And I guess also like, when in the timeline, right? Because most students really start thinking about college sometime, maybe in their junior year, like, where do I want to go? Maybe I should do some visits. But is that the right time to start asking questions are doing this research for a student with disabilities?

Annie Tulkin: Yeah, I would say that the like skill building aspect, self advocacy, skills, independent living skills, hopefully, that starts you know, as early as possible, before high school even and going on all through high school so that the student can start to develop those skills gradually. So that when they, you know, are a an 18 year old, they can go off and do some of these things more independently, or as independently as they’re able, the college search process. Quite frankly, many of the students that I support are starting their college search process, just like any other student, and they’re looking at the same things as other students are. So you know, does the school have the majors I want? You know, does it have the cultural fit the activities that I’m interested in, there is an added layer for many students I work with about thinking about the health care providers nearby or the continuity of care, thinking about whether or not they are able to go out of state, if there are insurance issues or Medicaid issues, if they get funding from state or federal agencies, sometimes students may lose that funding, if they choose to go to school in another state. So there might be some other kinds of considerations that, you know, students need to factor in. But what I usually do with students is work through a comprehensive list of accommodations, looking at academic accommodations, but also looking at housing at transportation and recreation. Because the ADEA covers all of those aspects of campus life. And then we use that to create a list of questions for the disability support offices. And I often encourage students to reach out to at least, their like top three or four schools to interview the people in the disability support office. And I say interview because, you know, students sometimes think like that, that the school is, is, you know, interviewing them, which is true they are, they’re looking at the students thing, you know, transcripts and their essays and all of those pieces. But the students is also interviewing the school in a lot of ways, right? So you’re going on the tour, you’re assessing whether or not this is going to be a good fit for you. And by interviewing the people in the Disability Support Office, you can get a better understanding of how those people operate in their jobs, what types of accommodations they may or may not provide, and do a vibe check to see like, are these people going to be supportive of me, and helpful when I need them or not. I’ve had students go and have those conversations and come out and say, I didn’t get a great feeling about that office. And so I don’t think I’m going to apply to that school, or if they’ve already applied to the school and been accepted, and they say, maybe I’m gonna, you know, go go to this other place, because I think those supports may be more robust or better fit for me. So having those conversations upfront can really help. Because usually when students get, you know, they’re college acceptance letters that can be, you know, January, February, March timeline, and then there’s a really quick turnaround until you get till May 1. So if you’ve already done that research upfront, kind of junior year of high school, Summer, going into senior year of high school, then you know, like what schools may or may not be a good a good fit for you. If the student has more significant medical needs and things like that, too. You definitely want to get started on looking through, you know, connecting with the Disability Support Office and seeing what might be possible earlier rather than later. Most disability support offices will have conversations with prospective students, it’s important that that students and families understand that they likely will not commit to giving any accommodation but a lot of what I guide students and families on as coming up with scenarios and questions that will at least get them the information that they’re seeking so that they can make an informed decision and kind of get a sense of whether or not it would be approved. Housing is usually a big piece for many of the students that I’m working with too. And sometimes those housing deadlines are May 1. So if you want to receive housing accommodations, you have to give documentation and apply for housing account. rotations the minute you commit to the school in order to get in the pipeline to get those housing accommodations. So the timeline, I mean, starting as early as possible on the skill building, and then you know, starting to figure out what the needs are and talk to the disability support officers, junior year of high school is probably the same timeline that you’re working with, in a lot of ways. So yeah.

Sheila Akbar: Yeah, thank you raised a lot of great questions for me, because I know a lot of families are worried about disclosing condition or a situation that might, I don’t know, we can use the word prejudice at university against accepting them. I know that’s a big concern, especially when it comes to mental health challenges or learning differences. And a lot of families are curious, like, how much should we disclose? And in that conversation that you’re encouraging us to have with the Office of Disabilities support, even before a student applies and gets accepted? Are we risking something there? And how do you navigate that? Because I think the thing about the vibe check, I think that is really, really important. Because if you’re getting the sense that they’re not going to support you, well, it’s unfair, but that’s not a place you want to be. Right. I think that’s a really important perspective to keep in mind. But But talk to us about that, like, are we worried about them making pre judgments on a student for disclosing something?

Annie Tulkin: Yes, so it’s important to understand that the admissions process applying to the school is completely separate from the Disability Support Office. So those two things are siloed. So people can share things with the people in the disability support Office, they don’t go back to the admissions department, that information doesn’t get shared, it would be a huge lawsuit that would occur that were, if that were to happen, so that does not happen. The other thing for families to be aware of is that in the admissions process, there’s no required disability disclosure. So there’s no checkbox of like, on the application, do you have a disability Do you not, it’s up to the student, if the student chooses to, you know, write their essay about their condition or their disability, that’s up to them. But the student should also be aware that that is not a space where then they that information goes to the Disability Support Office. So the student, even though the student might be disclosing a disability in their personal essay, that information doesn’t get them like transferred to the Disability Support Office, if the student wants to receive accommodations in the college setting. They have to disclose to the Disability Support Office that they have to go to the Disability Support Office, provide documentation, have a conversation go through the process to request accommodations. So from my perspective, I think, you know, given the recent Supreme Court verdicts and and universities kind of looking at diversity, equity and inclusion on campus, I think disability is an aspect of diversity. And so students can choose whether or not they want to disclose that information in their in their application or not. I have a lot of students who choose to write about their conditions or their disabilities as a part of their essay. And I think that’s a totally personal choice, and probably how you craft that narrative, and what story you’re telling is a piece of the puzzle, and you’d probably work with someone like Sheila on that. That’s more more your wheelhouse. But yeah, I think it’s just really important that people understand that the Disability Support Office is intentionally siloed from the admissions process, so people can talk to the Disability Support Office staff, and that doesn’t get factored into the admissions process. Also, for many of the students, just to say like many of the students I work with, if they have a mobility impairment and they use a wheelchair scooter or they have a more visible disability, if they use a white cane or whatever it is, or they you know, have hearing aids or use a sign language interpreter. They’re disclosing those things to be able to go on a college tour. So some some people don’t have invisible disabilities, right. And so they can’t hide that it’s a part of their personhood. And so you know, in those in those students do go on to college. Right. But also to that point, one of the challenges that many of the students I work with face is actually getting information on the campus physical space accessibility and requesting accommodations for their tours. different colleges do a different levels of support in this space. And they some make it really easy and simple for students to request accommodations for tours, or for admissions events and some don’t have a process or a policy. And so that can be really polarizing for students who are interested in a school and they’re meeting up obstacles right off the bat. So that’s actually one of the challenges that many of the students that I work with faces is just getting access to a standard tour.

Sheila Akbar: Yeah, that’s interesting and a little disheartening that that’s still happening in this day and age. Well, I’m, I’m curious if you can help us understand you mentioned diversity, equity and inclusion. And I think one of the things that a lot of I know employers are focusing on, and even in higher ed, if some tools have been taken away on the selecting diverse classes, side of dei, they want to double down on the inclusion side. So when students are accepted, let’s make sure this is a really inclusive, supportive environment for whatever the student looks like, or, or, you know, whatever challenges they may be facing, so that they can be successful there. And I’m curious about student life in general, for the kinds of students that you work with, because beyond getting the accommodations and support around, you know, activities of daily life, when we think about college, I think for most students, it’s going to a football game and going to parties and being member of all these clubs. What does that side of the equation look like right now for students with chronic conditions and disabilities?

Annie Tulkin: Yeah. So that sometimes on and it depends on campus and the school, but there might be student groups or organizations that are disability or chronic health condition focused. And that’s actually something that I tell a lot of the students that I work with to look for, or that we search for, together, when we’re looking at like what schools they might be interested in to see what sort of culture there is around disability on campus. There are, I think about 10 colleges right now that have a Disability Cultural Center, which is a different initiative from the Disability Support Office that they, the colleges have to have a disability support office in order to, you know, do accommodations for the students. A Disability Cultural Center really rings in sort of the cultural aspects of having a disability it has, most of them have convening spaces for students where they can get together and do things and learn about disability history, do advocacy on campus, some of them even have like cool kind of sensory rooms where students can like, hang out and chill out. And you know, much like a women’s center or, or a multicultural student center or an LGBTQ center, they provide a space for students to connect with other students who have, you know, similar conditions and similar interests. And so, if the student is looking for a school that has a strong disability vibe, they might be looking at schools that have a Disability Cultural Center, or an active student group that’s engaged in disability rights and disability work on campus. I think that that’s a question too, that students can ask the Disability Support Office to see like, what initiatives are going on. And you can also kind of do a Google search and just see look at the student organizations to see what’s available on that campus. I think that was we’re talking about inclusion to physical accessibility comes up a lot, but so does programmatic accessibility. And a lot of universities are inching slowly towards universal design. So universal design as a concept of having physical spaces set up so that they work for all people, and also having like programmatic or universal design for learning. So for example, like everyone gets a copy of class notes, not just students with disabilities who have that as an accommodation, or everyone gets a full readout transcript, or everyone gets the professor’s notes, just making things more universally designed, or the professor might give options. Do you want to take an exam? Do you want to write a paper, like what works best for you. And so there are universities who are really prioritizing both the physical aspects of universal design when they’re making making new buildings or working on wayfinding. And also the universal design for learning and thinking about different needs that students might have in the classroom to make it easier for students to engage and access course content and be part of that, that college experience. So that’s actually those are all really exciting things that are happening, but if you don’t know to look for them, and you don’t know what to ask about them, you might miss them. They’re not like hugely publicized. So I think that that’s something that that students and families can look at as well when they’re exploring campuses.

Sheila Akbar: That is really exciting and feels like we’re trending in the right direction towards more open and accessible campuses and experiences for students. I think that’s a great place to leave it, Annie. If people want to know more about what you do or seek out your help, where can they find you?

Annie Tulkin: Sure, people can find me at accessiblecollege.com. I’m also on Instagram and Facebook. So you can find me there. If you go to my website down at the bottom, I have a monthly newsletter that I send out, so you can sign up for that monthly newsletter as well.

Sheila Akbar: Awesome. And I’ll make sure all of that’s linked in our show notes. Well, thanks again for joining us. Hope to talk to you again soon. Thanks, Sheila. All right, friends, again, check the show notes for some of the resources that Annie mentioned, including her website. And I encourage you to follow her on Facebook, Instagram or LinkedIn. She does a lot of talks on this subject and is a hugely helpful resource and has so much wisdom in this area. And she could certainly introduce you to the people who can she’s very tied in to this network. So please do check her out. And come back for more with us next week. Thanks!

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